Feeling Like There Is Not Much Light At The End Of The Tunnel...

[CR5442]

It's been about 8 months since I stopped eating gluten. Since then I feel like I've been on a see-saw of one day feeling good, the next bad. Whilst overall I think my gut is improving there are other things that are taking its place. Every bug going around I seem to get. Flu, colds, and recently proper gastroenteritis to the point I couldn't eat anything for three days.

I'm being treated herbally for andrenal exhaustion, hormone issues etc. but I never feel like I get through one week where everything seems to be improving. Right now my liver feels congested... again.

Does anyone have any words of encouragement about timescales till you really start to see a difference in general overall health and feelings of wellbeing. Like another person who posted on here recently, I think depression would be a good way of describing this. A feeling like as soon as I fix one thing, another gets broken. And that isn't just in my health, also in my life too. I'm trying to let go as much as possible and let things take their own course, but feel completely trapped in a life circumstance that I have zero control over, am just reaping the consequences, which means I'm constantly tired and stressed.

Sorry, bit of a spill over there.

[ravenwoodglass]

I'm sorry your having such a hard time right now. One suggestion I would make is to stop the herbal treatments for a couple of weeks and see if you improve. If you are doing more than one preperation then if you are feeling better but still feel you need the herbs add them back one at a time and make sure that you are not having problems with some of the treatments. Just as with script drugs herbs can have side effects and not all are good for everyone. You may not be tolerating something in one of them.

[IrishHeart]

Dump the herbals. IMHO

Let your body heal itself off the gluten.

I found myself having more symptoms using herbals/remedies suggested by a Naturopath and once I stopped all those, I started to feel better.

Unless you have adrenal disease, like Addison's, your tired adrenals should rebound without too many supplements and herbals.

Drink a lot of pure water every day. It will cleanse you just fine.

Take a good gluten-free multivitamin and a good probiotic. That should do it.

Unless you have other deficiencies evident on blood work?---in which case, supplement appropriately, under the guidance of a doctor.

Hang in there. It is an up and down road of healing for sure.

[ravenwoodglass]

I found myself having more symptoms using herbals/remedies suggested by a Naturopath and once I stopped all those, I started to feel better.

This was also the case for me.

[YoloGx]

Hang in there Caroline! For some of us it just takes longer. Plus it may take more sleuthing on your part to figure out what all is going on.

I agree with the other posters, and you know me, the ex herbalist due to pretty severe salicylate sensitivity. Though I do use them now and then when I really need them--like right now I am using uva ursi, marshmallow root and nettles when my bladder is acting up. And like magic they are helping me once again--along with a homeopathic for cystitis. But this is rare for me these days (except for the nettles). I do believe that herbs are wonderful healing tools, but if they aren't doing the job, it has to make you stop and wonder if they are right for you or not.

Whether or not the herbs agree with you, it may be best to simplify simplify simplify right now to figure out what is going on. Maybe even simplify your diet more to see too if there is anything you are eating that might be bothering you besides just the gluten (or the herbs or whatever). It was a huge shock for me to discover for instance that I am sensitive to so many fruits, nuts, and vegetables as well as some meats--not to speak of the herbs. Sheesh! I certainly hope you don't have my extensive allergies etc. However, despite whatever convenience says, its best to be open minded and seriously observant if you are still having problems. Truthfully.

In my case, besides the salicylates, I have had to go off most animal fat to reduce the burden on my liver. I now can use a bit of skinless chicken cooked in with my veggies and azuki beans or black eyed peas, but not much plain chicken like the old days. And certainly not beef or pork or venison, or even eggs or butter.

Apparently damaged villi in the intestines often have difficulty absorbing fats properly--so many people here on celiac.com have had to struggle with congested liver and gallbladder issues. I feel like I have largely overcome it to the extent I did not have to get surgery, and no longer have pain, however it looks like this change of diet will be in place for me for some time while my body slowly heals. I still take nettle tea regularly since it is, while mild, still good for the liver as well as systemically, plus it is one of the few herbs that helps counteract the effects of salicylate sensitivity.

I do do very well with home made yogurt made from 1% organic cows milk. Others here need to use goats milk or no milk at all (or maybe substitute it with coconut or almond milk for instance). Recently I have also been making home made sauerkraut using some of the whey from the yogurt as a starter. Both are great for getting healing probiotics into your diet on a regular basis, which can go a long ways towards healing your damaged villi.

You also might want to see if you are meanwhile getting CC'd from trace gluten in your immediate environment. This could comparatively be a simpler answer to your problems. And perhaps the first thing to investigate. That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second. What that boils down to is to make sure everyone you are living with is not eating gluten, especially on the premises. You may even need to go so far as to have them change and shower before getting close with you. I have even gotten glutened from washing a bag of my brother's clothes for instance even though he wasn't even here on the premises. Don't you just love these autoimmune conditions??!

I find I also do better if I wash my hands a lot, especially before eating--anywhere!-- and establish a habit of not putting my hands to my face as much as possible. Its hard to break old habits like this, however it h as really helped me, as well as my partner and my friend who also has severe gluten sensitivity.

So good luck and good sleuthing to you Caroline!

Sending my best,

Bea

[Gemini]

You also might want to see if you are meanwhile getting CC'd from trace gluten in your immediate environment. This could comparatively be a simpler answer to your problems. And perhaps the first thing to investigate. That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second. What that boils down to is to make sure everyone you are living with is not eating gluten, especially on the premises. You may even need to go so far as to have them change and shower before getting close with you. I have even gotten glutened from washing a bag of my brother's clothes for instance even though he wasn't even here on the premises. Don't you just love these autoimmune conditions!

I am sorry but I have to comment on this paragraph and sometimes it's really hard not to insult people, but I will try and word this as best I can....

Please post proof that gluten cc shuts down blood flow through the carotid arteries by 30%, leading to depression, or state that this is your opinion only because this is not what causes depression. Depression has many causes and not all of it is true depression but I have never read anything pertaining to this anywhere and think it bad advice to give.

Secondly, telling anyone they cannot eat gluten while you are on the premises or having them shower and change clothes before getting close is about as close to full blown anxiety as I have ever heard. Celiacs, no matter how sensitive, do not need to live in a bubble, unless they want to but it gets very lonely in the bubble. Saying you got glutened by a bag of your brothers clothes when he was absent is just ludicrous and not something the newly diagnosed need to worry about...ever, unless you are in the habit of eating clothes.

Most of us realize what Celiacs need to be careful of and there is no need to post stuff like this when someone is trying to figure out why they don't feel better. It's obvious the OP has other things going on which may be contributing to her health issues and she also hasn't been gluten-free for very long.

Unnecessary anxiety over things like this should be avoided. Oh, man....I give up.....

[GottaSki]

I wish I could tell you the time frame in which you will feel better. It took over two years for me to even start healing -- turns out I had many food intolerances besides gluten that were impeding my gut from healing -- actually causing increased damage and symptoms.

I also took a myriad of supplements over those two years (some helped B complex and D certainly helped elevate those levels, amino acid and malic acid supplementation helped my fibro symptoms for short while but I never had significant improved health...I got sicker and sicker...finally stopped all of them when my health improved on elimination diet -- mostly because my liver/kidney function was getting worse while the rest of me was improving greatly.

Hang in there...keep asking questions and keep going to the doctor...I went thru periods of being so sick of non-answers that I gave up on docs...but ultimately a combination of western medical docs, holistic doc, an obscene amount of internet and medical journal research combined with being the most stubborn b*%@^ around - ultimately got me out of bed and on the path towards healing -- still have a long way to go but I am vertical rather than horizontal most days and more hopeful for a full future than I have been in many years.

Hoping your improved days arrive very soon!

[IrishHeart]

I wish I could tell you the time frame in which you will feel better.

Hang in there...keep asking questions and keep going to the doctor...I went thru periods of being so sick of non-answers that I gave up on docs..an obscene amount of internet and medical journal research combined with being the most stubborn b*%@^ around - ultimately got me out of bed and on the path towards healing -- still have a long way to go but I am vertical rather than horizontal most days and more hopeful for a full future than I have been in many years.

oh man, THIS IS ME. ...exactly.

and although newbies do not like to hear that it takes many months-- even years-- to heal a ravaged gut, it is the truth.

There is no set time table for recovery---everyone is different.

For the first time in YEARS (and I am 15 months gluten-free now) I am starting to feel "normal" and I have never lost hope that all will be well in time. I was discouraged, but people like Gemini, Ravenwoodglass, etc. told me "Hang in there. It will happen."

I have a long road ahead of me as my muscles, bones, joints were severely compromised, but I never waver in my focus. I am in PT 2X a week and I slowly regain my strength and mobility.

Add me to the "stubborn B---h" club. How do you think I got the Warrior Princess label?

Patience. Perseverance. Time.

[GFinDC]

Hi Caroline,

Time to get better depends on a lot of things. I have been on the gluten-free diet for over 4 years and really am doing much better so far this year. I have had some problems with fatigue though and digestion. I realized at long last that I can't handle grapes of any kind, so I ditched those from my diet and things improved. Then I woke up to not being able to handle any alcohol so I ditched that too, and things got even better. Then I was having problems with fatigue and memory and other stuff, so I went on a fast. I felt somewhat better the 2nd day and decided to drink some tea. I drank some Tazo Wild Sweet Orange tea, which I had been having for a month or so. I got tired for a couple hours afterwards. So I ditched that tea. That made a big difference and I got better after that. Still I am more tired than I should be so I am looking at ditching a few more things. I had added gluten-free bread and cheese to my diet this January, and also stevia. So I will eliminate those and see what happens. The only other things I added so far this year are maca, ginseng, and cinnamon, and those are more things I will trial eliminating.

So, I guess I am slowly getting around to saying I agree with the idea of eliminating any herbs and vitamin pills for a while. Along with anything else that could be a problem. And since anything can be a problem, a simple diet is the way to go. With slow additions as you progress.

[lucia]

I don't think that this autoimmune condition or disease (celiac/gluten intolerance) is as simple for many of us as "I eat gluten/I am sick; I stop eating gluten/I get better". That is the perspective of most M.D.s at this point, but the experiences of people on this board say differently. Personally, I think that other modalities besides Western medicine can help and may even be required for recovery. Some M.D.s believe this too, notably Dr. Mark Hyman.

I too am taking a long time to heal, but getting better over time. The things that I believe have been crucial: 1) adopting the Specific Carbohydrate Diet (SCD) early on in my recovery process, and 2) Traditional Chinese Medicine (TCM) including acupuncture and herbs.

Before I stopped eating gluten and was experiencing painful stomach cramps, Chinese herbs actually made the cramps go away. The problem was that once I stopped taking the herbs, the cramps came back (in response to gluten). So, my experience with herbs is the apparent opposite of a few other posters.

[lucia]

Secondly, telling anyone they cannot eat gluten while you are on the premises or having them shower and change clothes before getting close is about as close to full blown anxiety as I have ever heard. Celiacs, no matter how sensitive, do not need to live in a bubble, unless they want to but it gets very lonely in the bubble. Saying you got glutened by a bag of your brothers clothes when he was absent is just ludicrous and not something the newly diagnosed need to worry about...ever, unless you are in the habit of eating clothes.

Also, I believe that yolo self-identifies as someone with a high sensitivity to gluten. She is relating her experience, and if the original poster is someone who also suffers from high sensitivity to gluten, this may be useful. Certainly, it's common on this board to suggest avoiding hair and skin products with gluten in them, which I thought was really out there when I first heard it. I also don't think it's outrageous to think that anybody with a gluten sensitivity could be glutened from laundering the clothes of someone who eats gluten. I've seen my husband covered in crumbs after eating a sandwich. So, yeah, if she is handling clothes and shaking crumbs out of them and especially if she has a high sensitivity to gluten than, yes, it's entirely possible.

I imagine as someone who self-identifies with high sensitivity to gluten, a reply like this on a message board devoted to gluten intolerance would make her feel very lonely, which is really sad and arguably unnecessary. I'm personally grateful that I'm not as sensitive as yolo.

[kareng]

.

You also might want to see if you are meanwhile getting CC'd from trace gluten in your immediate environment. This could comparatively be a simpler answer to your problems. And perhaps the first thing to investigate. That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second. What that boils down to is to make sure everyone you are living with is not eating gluten, especially on the premises. You may even need to go so far as to have them change and shower before getting close with you. I have even gotten glutened from washing a bag of my brother's clothes for instance even though he wasn't even here on the premises. Don't you just love these autoimmune conditions??!

I find I also do better if I wash my hands a lot, especially before eating--anywhere!-- and establish a habit of not putting my hands to my face as much as possible. Its hard to break old habits like this, however it h as really helped me, as well as my partner and my friend who also has severe gluten sensitivity.

So good luck and good sleuthing to you Caroline!

Sending my best,

Bea

Certainly your personal glutening experiences are extreme compared to most, but they are your experiences.

What I would like to see is where the info on cc causing your carotid arteries to shut down blood flow. I haven't heard or read that anywhere. If the carotids do this, wouldn't all arteries do that? Where did you read this?

[YoloGx]

Also, I believe that yolo self-identifies as someone with a high sensitivity to gluten. She is relating her experience, and if the original poster is someone who also suffers from high sensitivity to gluten, this may be useful. Certainly, it's common on this board to suggest avoiding hair and skin products with gluten in them, which I thought was really out there when I first heard it. I also don't think it's outrageous to think that anybody with a gluten sensitivity could be glutened from laundering the clothes of someone who eats gluten. I've seen my husband covered in crumbs after eating a sandwich. So, yeah, if she is handling clothes and shaking crumbs out of them and especially if she has a high sensitivity to gluten than, yes, it's entirely possible.

I imagine as someone who self-identifies with high sensitivity to gluten, a reply like this on a message board devoted to gluten intolerance would make her feel very lonely, which is really sad and arguably unnecessary. I'm personally grateful that I'm not as sensitive as yolo.

t

Thank you for your reply Lucia. Not everyone is capable of seeing outside thier own reality, so I want o compliment you on your ability to do so while defending what I said. You are very kind and I appreciate it.

I suppose what I need to do in the future is to always couch what I have to say about my experiences in very careful language so I won't frighten anyone into thinking they are more restricted than they already feel. It certainly was never my intention to do so.

I honestly would like to be a whole lot less sensitive than I am. However I have had to face the fact that I have the problems that I do have. I am currently trying to figure out if I have any underlying toxicity which make me more sensitive to gluten than many others here with the help of a naturopathic doctor, since yes, it is not a nice burden to have or want.

The thing is however there are others here on celiac.com who are even more sensitive than I am. Plus what I have discovered has not only helped me but also my partner and a very good friend of mine They may not have to go to the extent that I do, however washing their hands more frequently has resulted in fewer migraines and subsequent depression and anxiety. I figured some words of caution as new areas to investigate might be of some use to Caroline or someone else who might read this Forum.

Of which, I am looking for the original information on gluten induced depression and the shutdown of the carotid arteries that I saw a while back. When I find it I will post it here. So far I have found the following information on gluten induced depression and anxiety: Open Original Shared Link

Gluten induced depression and anxiety in fact are very common, and have been discussed here on celiac.com as well as elsewhere, including pub med.

The fact is is that some of us who are super responders need to do more than just cut out the gluten from our diet. For me this includes not being exposed to air-born and contact gluten from hands and clothing. I am not as bad as some, however I have gotten frequently glutened mysteriously quite a lot of late, which does exactly coincide with my brother coming over into my house. And yes I should have known since I did get glutened from handling his clothes when I washed them for him one day. Needless to say, never again. I don't want to be like this.

I do and can go places and don't live in a bubble. However as said I wash my hands frequently and generally don't eat out. When a guest is over here covered with gluten dust from eating bread and cookies, it gets on the table or even on the towels when he or she only casually drips their hands in the water and then wipes them off on my towel without telling me.

This has happened repeatedly. I finally saw it and realized what it meant. Recently. Which is likely why I am home today recovering, again, since I got diarrhea once again last weekend for some unknown reason when my brother was visiting right after I used my towel in the bathroom. I was feeling great beforehand, but believe me not after. At first I thought it was something else, but finally with not only the D but also the migraine and then after the depression and anxiety and finally this beginning of cystitis (I am thankfully quickly overcoming) it has become crystal clear. I talked to my brother about it and he finally accepts it; a miracle in itself since he has been in major denial about this whole thing. However it looks like he's finally read something about it in the scientific journals more than likely (since that is the only source he believes--my mom gets the Scientific American as well as Science News both of which he reads avidly).

This also happened to me last year when I was taking care of my brother who was recovering from a coma, as well as my 96 year old mother he had been taking care of. My sister the nurse insisted thåt my mother eat gluten again, that somehow I was depriving our mother unduly. So gluten was reintroduced. After repeated migraines which both my boyfriend and I got from trace gluten in the environment, worse for me particularly since I was cleaning up my mother, I finally was starting to wheeze from it and get a sensitized kidney from it (yes that is what happens to me eventually folks--this is a rare response so don't worry). I immediately left to protect my health.

Since then, that experience unfortunately seriously made me more sensitive to gluten in the environment than I was before. Previous to that I had become less reactive due to all the proactive things I do to heal my villi etc.

This is why I mentioned it to Caroline, since I know she has little kids and may not have restricted her exposure on that level. Whether she needs to go that far or not, we don't know. But she might in a moment of quirkiness if you will want to check it out in case it is continuing to undermine her sense of well being by causing what IMHO and experience can be an underlying trace gluten reaction of anxiety and depression. Point being it could be a good clue that could save her time and suffering that very few here would be willing to mention perhaps if I get the drift properly.

The thing is an auto immune condition does not require having a lot of the substance there to react to it, especially if one is unlucky enough to be a super responder. This in fact is one reason I got so much better after years of trace gluten exposure to gluten undermining my physical and emotional health four years ago. All of a sudden I went from someone who would get sick from every bug that came around for months at a time to someone who only very rarely gets sick with a bug. I also suffered from unexplained depression and anxiety up until I eliminated all sources of trace gluten in my environment that I could figure out. An this was after being off what I considered to be all gluten in my diet for over 11 years, and mostly being off gluten for 20 years before that when I thought I just had an allergy to the wheat family. Although my health had improved I did I know how much more complicated it was to go off all trace gluten, but nevertheless, it has been totally worth it.

I thought it was crazy but I did the switch at the suggestion of my eldest sister who had gotten over her fibromyalgia by avoiding gluten from her diet and trace gluten in her environment when nothing else worked. I seemingly miraculously became someone who rarely if ever get any cold or flu anymore. I alsono longer gets depression or anxiety unless I get trace contaminated by gluten first. The fact was however that before I went off all trace gluten, I wasn't as obviously reactive as I am now with the big D and all the rest, including migraines. However it cost me in my previous more ignorant state to just mostly be off gluten and not the trace stuff by creating constant poor health which included also having this unexplained depression and anxiety. Whereas now I have pretty damn good physical and mental health, now being 62 years young.

My boyfriend too did not know he had severe gluten intolerance. However he used to get migraines constantly, had to take Welbutron for his constant depression and ADHD. All of which is now GONE. As well as his constant colds and flue and allergies to pollen. Since he was a little kid. Like me, he got this condition likely early as seen in retrospect.

Whew--OK I am not angry. Though I am upset at the System that allowed and allows so much suffering on both my part and his and so many others--and for what??

So yes I do spout my mouth off sometimes perhaps without couching it properly. I meant no harm by it. I had no intention of scaring or offending anyone, so I apologize to anyone who became upset. I had however to learn a lot of this about being a super responder over a much longer period of time than it would have taken if a few kind suggestions had been made more often, sooner. It seems instead I have headed once again right into what is often not said for a variety of reasons. For that I do not apologize.

[YoloGx]

Certainly your personal glutening experiences are extreme compared to most, but they are your experiences.

What I would like to see is where the info on cc causing your carotid arteries to shut down blood flow. I haven't heard or read that anywhere. If the carotids do this, wouldn't all arteries do that? Where did you read this?

Am looking for it. It was on U-Tube--information from a new book (last year). I will post it when I re-find it. The suggestion was that for those who suffer from depression, going off gluten is a very good idea due to this supposed common reaction of the carotids upon exposure to gluten for those who have severe gluten intolerance but might not otherwise be conscious of it except for the depression/anxiety.

My experience being a super responder just takes it a step further perhaps. I suppose my bf could be said to be that too, as well as my other friend and co-worker since they both respond to trace gluten with their own symptoms (migraines for the one and joint pain for the other) as well as both getting the depression and anxiety as the effect is on the way out.

[IrishHeart]

I don't think that this autoimmune condition or disease (celiac/gluten intolerance) is as simple for many of us as "I eat gluten/I am sick; I stop eating gluten/I get better".

I have not met a single celiac who ever found it that simple. There are almost always complications and other factors involved

Unfortunately, that is all the advice that celiacs are given by doctors.

After going gluten free, there should be follow-up lab work and testing for other IBD diseases and lymphoma, for example.

It's great that herbals worked for you , but I cannot say the say. All I did was spend a lot of $$$ for nothing--except feeling more toxic and sick. I tried this route for 18 months--under the guidance of a Naturopath and a holistic/integrative MD. Total waste of time and money.

What DID help was PROBIOTICS, digestive enzymes and eating a plain, whole foods diet.

[IrishHeart]

That could well be enough to make one depressed, since even CC gluten exposure shuts down the blood going through the carotid arteries to the brain roughly 30%--which then often causes depression. Anxiety is a close second.

While depression and anxiety are well- documented in medical literature as associated with celiac/gluten, I have never read anywhere that gluten "shuts down blood flow through the carotid arteries" to 30%.

I have read everything about depression/anxiety I could find in the Gluten Files and in dozens of Pub Med articles and I do not recall reading anything like that.

Please post a valid source for this information? I would like to read it. Thanks.

[YoloGx]

While depression and anxiety are well- documented in medical literature as associated with celiac/gluten, I have never read anywhere that gluten "shuts down blood flow through the carotid arteries" to 30%.

I have read everything about depression/anxiety I could find in the Gluten Files and in dozens of Pub Med articles and I do not recall reading anything like that.

Please post a valid source for this information? I would like to read it. Thanks.

I would like to re-find it too--and am looking for it Irish Heart. Here is what I have so far, a reference to a study mentioned by Vicki Peterson in the articles section of celiac.com that shows a vastly reduced blood flow to the brain due to gluten intolerance. The amount of reduction here however was not mentioned--just that it affected a very high percentage of the patients that were tested. The study however was small. Just 30 people I think. Nevertheless it looks like a promising and relatively easy area for further study:

https://www.celiac.com/articles/21758/1/Gluten-Sensitivity-and-Depression/Page1.html

Here is the quote:

In a study examining blood flow to the brain, 15 patients with untreated celiac disease were compared to 15 patients treated with a gluten-free diet for a year. The findings were amazing. In the untreated group, 73% had abnormalities in brain circulation by testing while only 7% in the treated group showed any abnormalities. The patients with the brain circulation problems were frequently suffering from anxiety and depression as well.

Here is another interesting article relating to this topic:

Open Original Shared Link

Here's an entertaining clip about recent papers on the subject:

And another just regular person blogging and wondering why more research hasn't been done in this area: Open Original Shared Link

Meanwhile, as far as the herbal question goes, herbal treatment works for many if used intelligently, but obviously its not for all. Similar to most things I would guess--especialy IMHO standard AMA solutions are not for everyone either, as my weathered, battered body can attest. We are all a little different in our specific responses and physiology. The great thing is that there are many ways to skin a cat -- and if you are persistent and "dogged" (pun intended) enough, you just might find the way that works for you. Its good though to remain positive and supportive about the experience of others meanwhile,,,

[MitziG]

I wish I could tell you WHEN it would get better- but I CAN tell you it will! Myself and my two kids were all dx last April, and our individual recovery has gone very differently. I have had Celiac for 30+ years and was so used to feeling awful I didnt dare imagine what it was like to feel good. Chronic fatigue, interstitial cystitis, no immunity to viruses, frequent bouts of what I thought was "IBS" and ZERO energy, ever! But around the 7-8 month mark, I started noticing I didnt feel so awful anymore. Now, at 11 months, I feel pretty darn good most days- and I have energy to get through the day without even needing a nap, let alone the 4 naps a day I used to take! My daughter, who was asymptomatic at time of dx, has felt awful since the day she went off gluten. She has had one weird immune issue after another flare up, her eczema is worse, she is constantly sick with every virus imaginable and has developed hypersensitivity to gluten to the point that I almost DO think she belongs in a bubble! I keep[ promising her she will feel better soon--but I wish I knew when too! It is hard when she felt good BEFORE she went gluten free! My son, who is 8, was the reason the rest of us were dx- he was the one with the tummy issues- as well as major depression and anxiety. The stomach aches improved right away, the depression did not improve until we started major nutritional supplementing a few months ago. Anxiety is still persisting, but I suspect there may be other food intolerances at work as well.

So, if you are sure cc isnt an issue, and you have ruled out additional intolerances (dairy and soy are big ones) then it is probably safe to say it is just going to take more time. But it will happen. And when it does, it will be such a blessing to have your life back that I cant begin to describe it. Hang in there!!

[YoloGx]

OK--here's what I have so far. It may be "It" I don't know. I still wonder about the article/book referred to on U-tubethat I saw a year or so ago. Nevertheless, it looks pretty solid in its way. Obviously more research needs to be done, should have been done, and now hopefully at last will be done connecting severe gluten sensitivity and neurological disorders (including depression), often connected with celiac, but up til now often not investigated, much like DH wasn't until relatively late in the game:

Open Original Shared Link

[Takala]

I love that paper, but, as a person with the ataxia & brain damage and the initial lack of gut symptoms that Dr Hadjivassiliou is writing about, I just read the thing quickly, and.... I don't think it says what you think it does.

But it should be REQUIRED READING for any neurologist and gastro doc.

For anyone who feels faint and queasy after reading that, (the pdf has kewl pictures of brains with celiac damage, and the premise is that it should not be thought of just as a gut disease ) think of it as motivation to stay on a gluten free diet, because at least in my case, some of the symptoms eventually did resolve.

______

Things regarding cross contamination that sound implausible until it happens to you~

edited to add: as a person who lives with someone who does business travel, and eats out while doing so, d*mned right he can bloody well get cleaned up before coming near me, I can not count the number of times I have gotten SICK 24 hours later after the Return of the Germ Vector from those filthy airplanes. Mandatory clean up helps prevent these episodes of the Curse of the Returning Traveller. And I wipe down my steering wheel on the car, a lot, because Men Eat Sandwiches When Driving. More of you should try doing this and see how dirty the moist paper towel comes up - you'd be appalled.

And, as an outdoors person who at times is completely covered in dust and detritus of things that I am allergic to, I also don't let my previously worn clothing back into the bedroom, and it's not unusual for me to go thru 2 to 3 changes of clothes a day. I was several years into the gluten free diet before we started banning gluten bearing animal/pet feeds from the premises, and only because we had a very sick horse, who it turns out was vet diagnosed with a lot of allergies, some of which were grass/hay products which were technically related to the rye grass family, and that is, after all, RYE, like in the triticum family. And that ban subsequently helped my overall health. Except I am also allergic to certain other grasses. Then we adopted the dog which turned out to be wheat/soy allergic, and very sensitive. I still do not let that dog into the main hay storage area because there is no way to really completely decontaminate the entire thing, and he can also be a dust carrier that will affect both of us. If he then licks his paws or sides, after laying down in it, which we've all seen dogs do, he could get a reaction.

Ever had to rinse and dry a 130 lb hairy dog before it can re enter the house so it won't puke and scratch itself raw later ? Wanna play ?

I've seen the hay guy bring 2 kinds of hay and straw along with our load, for other customers. I am certainly not going to look at the hay trailer, and tell anybody I can't take those hay bales because it was "touching straw" - but you get the idea. I've also cracked open bales and gotten a surprise. I did this last night, cut open a bale of grass hay and it was solid alfalfa in the middle. I try to avoid generic mystery type grass bales. I don't want to be breathing this stuff, and hay is notoriously dusty.

Our septic contractor was pulling into the driveway with a load of wheat straw when I caught him and politely refused it - we sprinkled "safe" hay, instead, on the new lateral field with the grass seed- the last thing I wanted was that trash blowing around, or the birds carrying it and dropping it, where that horse could possibly get it. Or the dog would roll in it.

Remember that drywall contains wheat starch, also. It is perfectly possible for construction work clothes to contain a lot of gluten trash.

I was hanging laundry on the line recently, but this week it goes into the dryer, because there is so much tree pollen going off that there is no use exposing wet clothing to it. At least I don't live near a wheat field....

[CR5442]

Hi everyone. Thank you all so much for giving your thoughts on this. It makes me feel so much brighter knowing that there is indeed light. Regarding diet and possible gluten CC. I am absolutely sure that my diet includes only the things that I tolerate. About half a year ago, when my symptoms were extremely bad, my acupuncturist did a pulse test on a lot of things I ate daily. There are only two things I really can't eat... gluten and coconut.

Sometimes I get a fast pulse after eating something so I stop eating, then after a few weeks go back and try again, and often the fast pulse doesn't happen again. This leads me to believe that it might not be food causing a reaction, perhaps just the state of my body at the time of eating... I might be going through a weak phase physically where healing has slowed, or i'm not getting enough nutrients, or am fighting off a virus or something.

Interestingly we had a horrid virus January last year, and with this bout of gastro I had recently I got the similar sinus drainage and colour that I had then. Awful headaches, bright yellow mucus (which I believe indicates viral infection) and liver congestion (which also indicates virus). I wonder if all of this up and down is actually because my body is having to learn all over again how to fight external microbes... rather than fighting itself? Any thoughts?

I did have a reaction to Eleutherococcus (Ginseng) in my last herbal mix, so I would agree that one should be particularly careful. Key points were holding of lots of water, a general feeling of anger/irritation, completely foggy headed etc. These are the symptoms we might say were a celiac reaction too. However, once they took that out of the mix the symptoms went away completely. I had a break between the two mixes and can absolutely say hand on heart that the herbs are not the problem. I felt like I took many steps back energy wise/health wise during the break.

There is the TCM/complementary medicine idea that when you are healing often you have to go back over old ground, both physically and mentally. I'm wondering if that might be what is going on? My personal circumstances of being separated from my husband and looking after two small children, and sitting a degree, and being in celiac recovery are all extremely challenging. People keep saying to me that I must feel down, expect to feel exhausted and a bit helpless. Until recently I think I was in complete denial. However, I suppose as the healing goes on on both plains, it is a necessity that these feelings should come up right? Otherwise I might still be in adrenal exhaustion, running on empty, frantic mother mode??

Thoughts are very welcome. Does anyone else feel that the holistic approach as worked for them, rather than looking at individual possible culprits of depression etc?

[YoloGx]

I love that paper, but, as a person with the ataxia & brain damage and the initial lack of gut symptoms that Dr Hadjivassiliou is writing about, I just read the thing quickly, and.... I don't think it says what you think it does.

But it should be REQUIRED READING for any neurologist and gastro doc.

For anyone who feels faint and queasy after reading that, (the pdf has kewl pictures of brains with celiac damage, and the premise is that it should not be thought of just as a gut disease ) think of it as motivation to stay on a gluten free diet, because at least in my case, some of the symptoms eventually did resolve.

______

Things regarding cross contamination that sound implausible until it happens to you~

edited to add: as a person who lives with someone who does business travel, and eats out while doing so, d*mned right he can bloody well get cleaned up before coming near me, I can not count the number of times I have gotten SICK 24 hours later after the Return of the Germ Vector from those filthy airplanes. Mandatory clean up helps prevent these episodes of the Curse of the Returning Traveller. And I wipe down my steering wheel on the car, a lot, because Men Eat Sandwiches When Driving. More of you should try doing this and see how dirty the moist paper towel comes up - you'd be appalled.

And, as an outdoors person who at times is completely covered in dust and detritus of things that I am allergic to, I also don't let my previously worn clothing back into the bedroom, and it's not unusual for me to go thru 2 to 3 changes of clothes a day.

.............

Remember that drywall contains wheat starch, also. It is perfectly possible for construction work clothes to contain a lot of gluten trash.

I was hanging laundry on the line recently, but this week it goes into the dryer, because there is so much tree pollen going off that there is no use exposing wet clothing to it. At least I don't live near a wheat field....

Takala, you are so right about that above otherwise fantastic paper not applying to my point. It does not. No mention of the arteries, though vascular damage was mentioned in passing several times from build up of various gluten induced materials as well as damaged mitochondria. However it is relevant to the subject of how gluten can mess with one's mind, mood and nervous system in general.

So far all I have for real proof for now is the article here on celiac.com by Vicky Pederson that I listed earlier. She based her statement on some research from somewhere and it may be what the person was referring to on U tube last year, since Dr. Pederson wrote a book about celiac, including the topic of depression. I am thinking maybe I should either read the book or contact her to get her source. She is local to my area.

Meanwhile, thank you for bringing up your own sensitivity issues here with cross contamination of gluten of your significant other's clothes and person--similar to issues I have also had to deal with recently. I also have had to deal with the animal issue (we changed the cat food to no grain and they do better on it anyway) as well as with my mom's dog.

Ironically despite all my sensitivities, or maybe because of it, I am a Jill of All Trades and Property Manager qua minor construction boss so I know what you mean about drywall etc. etc. I have been exposed to it all from an early age. The fact I have done this job is a minor miracle, but also kind of not the smartest thing I could have done with my last 15 years. If I had known in retrospect just how sensitive working with old construction and new building materials would make me, I would have done something else. I have loved it but it has not been good for my health to put it mildly.

As it is I am trying to veer into something else that is less cause for severe exposure than glutenous building materials. But its kind of hard when meanwhile my health has been short circuited so much recently not at work, but from my dear brother (fume!!). Ironically at work I am the boss so its not as much a problem plus I will wear a mask when necessary and wash and change my clothes. Plus they have seen me in good form and the opposite and by now know pretty much why. They also remember how I used to be and prefer the new me. The difference is rather glaring when I have been CC'd or not. I have recently set boundaries and most beneficient miracle of all, my brother seems to finally get it. It helped though to have had one of my workers tell him that I was really upset with him before my brother finally saw me however.

The fact is is that I live in less of a bubble than most women my age. Sounds like you do too. You just have had to learn to be observant and pro active to protect yourself--and use all the remedies you can think of when necessary. Its nice not to be alone, so thank you again for speaking up and being here.

[YoloGx]

Hi everyone. Thank you all so much for giving your thoughts on this. It makes me feel so much brighter knowing that there is indeed light. Regarding diet and possible gluten CC. I am absolutely sure that my diet includes only the things that I tolerate. About half a year ago, when my symptoms were extremely bad, my acupuncturist did a pulse test on a lot of things I ate daily. There are only two things I really can't eat... gluten and coconut.

Sometimes I get a fast pulse after eating something so I stop eating, then after a few weeks go back and try again, and often the fast pulse doesn't happen again. This leads me to believe that it might not be food causing a reaction, perhaps just the state of my body at the time of eating... I might be going through a weak phase physically where healing has slowed, or i'm not getting enough nutrients, or am fighting off a virus or something.

............

There is the TCM/complementary medicine idea that when you are healing often you have to go back over old ground, both physically and mentally. I'm wondering if that might be what is going on? My personal circumstances of being separated from my husband and looking after two small children, and sitting a degree, and being in celiac recovery are all extremely challenging. People keep saying to me that I must feel down, expect to feel exhausted and a bit helpless. Until recently I think I was in complete denial. However, I suppose as the healing goes on on both plains, it is a necessity that these feelings should come up right? Otherwise I might still be in adrenal exhaustion, running on empty, frantic mother mode??

Thoughts are very welcome. Does anyone else feel that the holistic approach as worked for them, rather than looking at individual possible culprits of depression etc?

Hi Caroline,

I am glad you only react to just two things, gluten and coconut. Though I would still keep an eye out if you know what I mean. One's bodily reactions can change over time, especially as you clear more of the old stuff out. I am betting your acupuncturist might agree.

I still take a holistic approach, though never a blind approach to anything. I don't just believe something to be true because it fits into a particular system, although I am open to learning. However as said, I think often the alternative approaches hold more of the truth currently than otherwise when it comes to many of the conditions we get with celiac and gluten sensitivity. Neither holistic or AMA however has really done sufficient research to encompass gluten sensitivity adequately however -- which is one reason I think many of us have had to hopscotch around between various methods and modalities--since a good grounded understqnding of our condition is not generally widely known.

What remains ironic for me is that with salicylate sensitivity, I break the book on that one too. It seems when I really need an herb for something, someway somehow I find something that really helps me even though one is generally not supposed to use herbs at all with sals sensitivity due to most herbs high salicylate content. Certainly it helps that I know both herbs and my body pretty well.

Meanwhile as said previously, I am finding investigating homeopathics both fascinating and very useful. I am now seeing a homeopath/naturoapthic doctor too. I plan to learn more from her through various lab tests as well as seeking her advice using homopathics. She is young and bright--and I find I respect her approach, something I can't always say I have done from folks on either side of the issue of straight or alternative methods of healing.

[YoloGx]

Hi everyone. Thank you all so much for giving your thoughts on this. It makes me feel so much brighter knowing that there is indeed light. Regarding diet and possible gluten CC. I am absolutely sure that my diet includes only the things that I tolerate. About half a year ago, when my symptoms were extremely bad, my acupuncturist did a pulse test on a lot of things I ate daily. There are only two things I really can't eat... gluten and coconut.

Sometimes I get a fast pulse after eating something so I stop eating, then after a few weeks go back and try again, and often the fast pulse doesn't happen again. This leads me to believe that it might not be food causing a reaction, perhaps just the state of my body at the time of eating... I might be going through a weak phase physically where healing has slowed, or i'm not getting enough nutrients, or am fighting off a virus or something.

............

There is the TCM/complementary medicine idea that when you are healing often you have to go back over old ground, both physically and mentally. I'm wondering if that might be what is going on? My personal circumstances of being separated from my husband and looking after two small children, and sitting a degree, and being in celiac recovery are all extremely challenging. People keep saying to me that I must feel down, expect to feel exhausted and a bit helpless. Until recently I think I was in complete denial. However, I suppose as the healing goes on on both plains, it is a necessity that these feelings should come up right? Otherwise I might still be in adrenal exhaustion, running on empty, frantic mother mode??

Thoughts are very welcome. Does anyone else feel that the holistic approach as worked for them, rather than looking at individual possible culprits of depression etc?

Hi Caroline,

I am glad you only react to just two things, gluten and coconut. Though I would still keep an eye out if you know what I mean. One's bodily reactions can change over time, especially as you clear more of the old stuff out. I am betting your acupuncturist might agree.

I agree that one can go through valuable periods of time experiencing what are called healing crisis. The thing is however that you don't want that crisis to go on and on.

I still take a holistic approach, though never a blind approach to anything. I don't just believe something to be true because it fits into a particular system, although I am open to learning. However as said, I think often the alternative approaches hold more of the truth currently than otherwise when it comes to many of the conditions we get with celiac and gluten sensitivity. Neither holistic or AMA however has really done sufficient research to encompass gluten sensitivity adequately however -- which is one reason I think many of us have had to hopscotch around between various methods and modalities--since a good grounded understqnding of our condition is not generally widely known.

What remains ironic for me is that with salicylate sensitivity, I break the book on that one too. It seems when I really need an herb for something, someway somehow I find something that really helps me even though one is generally not supposed to use herbs at all with sals sensitivity due to most herbs high salicylate content. Certainly it helps that I know both herbs and my body pretty well.

Meanwhile as said previously, I am finding investigating homeopathics both fascinating and very useful. I am now seeing a homeopath/naturoapthic doctor too. I plan to learn more from her through various lab tests as well as seeking her advice using homopathics. She is young and bright--and I find I respect her approach, something I can't always say I have done from folks on either side of the issue of straight or alternative methods of healing. Nevertheless, I have always tried to keep a positive attitude when I finally find I need to see a doctor or a practitioner.

[AVR1962]

Are you taking a good quality probiotic? I too caught everything that came along until I started on probiotics. That made a big difference for me.