Scared - How Long Does It Take To Feel Okay?

[katrina500]

Hello everyone

I was diagnosed by blood test and then by biopsy in October 2010. I have been gluten free since then and made a few mistakes, but can say since at least February 2011, even cross contamination would be hard, I am exceptionally careful. I continue to have the following problems:

1. Exceptional, exceptional fatigue to the point of collapse and can barely walk up the road sometimes.

2. Pains in my calves

3. Difficulty walking as a result of the fatigue and my feet drag on the floor.

4. Tingling at the back of my head

5. Dizziness (turning to vertigo sometimes).

6. Symptoms all made worse by physical activity.

7. A sort of weird collapsy think I get sometimes (though I don't collapse), but it's like the brain fog is so bad it's going to burst out of my head.

Strangely enough, in February, I felt fabulous and then all the above symptoms came back again, out of nowhere.

My B12 levels etc are all good. I had my biopsy repeated yesterday and whilst I don't have the formal results yet, the Doctor said everything was "looking fine and nice and healthy".

I do drink a bit too much (the initial symptoms leading to the diagnosis of Celiac Disease came after a few days of heavy drinking). I smoke too. I have a very stressful job.

Can my symptoms STILL be as a result of my diagnosis and if so, why did I feel great in February? Can this still be as a result of being glutened for years (assuming it was years)? How long will it take to go away and why do I still feel like this if my endoscopy said my insides looked good?

I really am feeling so desperate and tearful. I don't know how much longer I can go on like this for and in my darkest days I wish I could just die in my sleep.

Please help me.

Thank you.

[quincy]

Hello everyone

I was diagnosed by blood test and then by biopsy in October 2010. I have been gluten free since then and made a few mistakes, but can say since at least February 2011, even cross contamination would be hard, I am exceptionally careful. I continue to have the following problems:

1. Exceptional, exceptional fatigue to the point of collapse and can barely walk up the road sometimes.

2. Pains in my calves

3. Difficulty walking as a result of the fatigue and my feet drag on the floor.

4. Tingling at the back of my head

5. Dizziness (turning to vertigo sometimes).

6. Symptoms all made worse by physical activity.

7. A sort of weird collapsy think I get sometimes (though I don't collapse), but it's like the brain fog is so bad it's going to burst out of my head.

Strangely enough, in February, I felt fabulous and then all the above symptoms came back again, out of nowhere.

My B12 levels etc are all good. I had my biopsy repeated yesterday and whilst I don't have the formal results yet, the Doctor said everything was "looking fine and nice and healthy".

I do drink a bit too much (the initial symptoms leading to the diagnosis of Celiac Disease came after a few days of heavy drinking). I smoke too. I have a very stressful job.

Can my symptoms STILL be as a result of my diagnosis and if so, why did I feel great in February? Can this still be as a result of being glutened for years (assuming it was years)? How long will it take to go away and why do I still feel like this if my endoscopy said my insides looked good?

I really am feeling so desperate and tearful. I don't know how much longer I can go on like this for and in my darkest days I wish I could just die in my sleep.

Please help me.

Thank you.

gosh I am so sorry to hear how bad you are feeling. I have been there too, the part about just passing in my sleep or at least staying asleep to not have to deal with the array of symptoms. I think that is what is so bothersome is that it's not just a stomach ache or D, its the dizziness, anxiety, depression etc.

many others on this forum have been to hell and back so I am sure they can speak from greater experience than I, but it took months for me to recover and there are many residual issues that need to be worked through as a result of gluten poisoning

many respondents will soon ask the question I am asking: what are you eating? makeup products, handsoaps etc. all of these things add up. have you changed all pots and pans, wooden cutting boards, spoons. check your shampoo, your toothpaste. Is your B vitamins and vitamin D levels ok? vitamin D is essential for recovery IMHO. make sure your Vit D levels are in normal range. I don't think smoking and drinking helps. go with gluten free beverages etc. I wouldn't even trust potato vodka. I have had gluten-free vodka from sweeden but I forget the brand. not something I do much at all.

hang in there. It WILL get better......

[ravenwoodglass]

many respondents will soon ask the question I am asking: what are you eating? makeup products, handsoaps etc. all of these things add up. have you changed all pots and pans, wooden cutting boards, spoons. check your shampoo, your toothpaste. Is your B vitamins and vitamin D levels ok? vitamin D is essential for recovery IMHO. make sure your Vit D levels are in normal range. I don't think smoking and drinking helps. go with gluten free beverages etc. I wouldn't even trust potato vodka. I have had gluten-free vodka from sweeden but I forget the brand. not something I do much at all.

In addition to the things that were mentioned here do be sure to check any meds or supplements you are taking with the makers. Supplements with wheat and barley grass are not safe but may still say gluten free on the label so do read all ingredients. Until you are feeling better it would be a good idea not to drink as celiac can impact liver function. In addition some of us are sensitive to distilled gluten grains in alcohol and vinegars, not many but since you are feeling bad do avoid them until you are feeling better. Some cigs have gluten ingredients. I switched to an additive free brand that is just tobacco. An unexpected bonus to that for me is I effortlessly cut my smoking down to only 4 or 5 a day where with my old brand I smoked a pack a day. I don't think nicotine is the only addictive substance in some brands.

It can take some time to heal so be patient and be good to your body as much as possible going with whole unprocessed foods for the most part. Also if you have a significant other who eats or drinks gluten items make sure they throughly brush their teeth before you kiss. We can become very sensitive to trace amounts of gluten once we go gluten free.

[katrina500]

Thanks to both of you for your kind and helpful comments.

Since I was diagnosed, my partner has become gluten free as well. We retain the old chopping boards and wooden utensils from when we used to eat gluten, but they've all been scrubbed to within an inch of their lives and indeed even put in the dishwasher.

Is it necessary to buy new ones even though there's no gluten in house?

Thank you.

[ravenwoodglass]

Thanks to both of you for your kind and helpful comments.

Since I was diagnosed, my partner has become gluten free as well. We retain the old chopping boards and wooden utensils from when we used to eat gluten, but they've all been scrubbed to within an inch of their lives and indeed even put in the dishwasher.

Is it necessary to buy new ones even though there's no gluten in house?

Thank you.

Personally I would replace them just to be on the safe side.

[Korwyn]

Thanks to both of you for your kind and helpful comments.

Since I was diagnosed, my partner has become gluten free as well. We retain the old chopping boards and wooden utensils from when we used to eat gluten, but they've all been scrubbed to within an inch of their lives and indeed even put in the dishwasher.

Is it necessary to buy new ones even though there's no gluten in house?

Thank you.

We had to replace chopping boards (both wood and restaurant grade plastic), wooden and some nylon utensils, baking stones, non-sealed stoneware, non-stick cookie sheets, colanders, sifters, a pasta cooker, measuring cups, and a couple pieces of non-stick cookware that apparently had minuscule scratches. It will depend on your degree of sensitivity and reactivity (you may be sensitive but non-reacting to tiny amounts). It took me some time to figure out that was one of several areas from which I was getting CC'd. Be aware I'm a super-sensitive, I cook a lot, we made all our own bread, and my wife is a Pampered Chef consultant, so everything we owned had seen heavy use and lots of gluten. You may not have to get so extreme.

[IrishHeart]

I feel your frustration. I even had some of your symptoms like painful calves, feel like I am dragging , crying and wishing for death on the worst days, etc. until I found out by requesting blood work was my folate levels were really low. Both B-12 and Folate levels are affected by celiac and will cause this flagging fatigue, feelings of sadness, etc... Have them checked, please!

D levels are always affected by celiac. Those need to be checked and supplemented.

Definitely replace cutting boards (JMHO)

The small intestine (even if your doc says it "looks good" )takes a long time to recover. Some people take 2 years (I know, I hate that thought, too!)

Any exercise drains me. Muscles have been impacted by malabsorption, so give yourself time to heal.

I know you say you are under stress, but both smoking and drinking can irritate your gut and impact nutrients and vitamin levels that are already deficient because of the damaged gut. (believe me, I would love a nice martini right now myself )....but everything I read says gut healing is hampered by those things and you may want to take it easy on both for a while. Stress does not help matters and you may need to find a way besides drinking and smoking to alleviate it. (I know, the last thing you want to do is give up something else, right? I hear ya!!)

These are just some thoughts--all offered in my humble opinion.

I hope you feel better soon!

[katrina500]

I feel your frustration. I even had some of your symptoms like painful calves, feel like I am dragging , crying and wishing for death on the worst days, etc. until I found out by requesting blood work was my folate levels were really low. Both B-12 and Folate levels are affected by celiac and will cause this flagging fatigue, feelings of sadness, etc... Have them checked, please!

D levels are always affected by celiac. Those need to be checked and supplemented.

Definitely replace cutting boards (JMHO)

The small intestine (even if your doc says it "looks good" )takes a long time to recover. Some people take 2 years (I know, I hate that thought, too!)

Any exercise drains me. Muscles have been impacted by malabsorption, so give yourself time to heal.

I know you say you are under stress, but both smoking and drinking can irritate your gut and impact nutrients and vitamin levels that are already deficient because of the damaged gut. (believe me, I would love a nice martini right now myself )....but everything I read says gut healing is hampered by those things and you may want to take it easy on both for a while. Stress does not help matters and you may need to find a way besides drinking and smoking to alleviate it. (I know, the last thing you want to do is give up something else, right? I hear ya!!)

These are just some thoughts--all offered in my humble opinion.

I hope you feel better soon!

[katrina500]

Thanks so much, yes I do plan to stop smoking, in the next week or so. I find it harder to not drink and smoke when I feel so down as it gives me some crumbs of comfort (not gluten crumbs of course! ). But I know it's something I must do, will get myself some nicotine patches.

Thanks again (ps: I have an Irish heart too, well in fact my whole body is Irish and my intestines it seems, I'm from County Kerry!)

[IrishHeart]

Thanks so much, yes I do plan to stop smoking, in the next week or so. I find it harder to not drink and smoke when I feel so down as it gives me some crumbs of comfort (not gluten crumbs of course! ). But I know it's something I must do, will get myself some nicotine patches.

Thanks again (ps: I have an Irish heart too, well in fact my whole body is Irish and my intestines it seems, I'm from County Kerry!)

Then, I am guessing you have read that many people of Irish heritage are celiacs, yes? The hardest thing is knowing I can never have a Guinness again.

County Kerry is just one of the many beautiful counties we have visited on 4 trips to your gorgeous country!! We think you live in paradise. I'm in NY in the US. Our honeymoon in 1997 started our love affair with Ireland. My great-grandmother was from County Clare, my husband's grandparents from Tipperary and Newry.

I hope you can give up the smokes. Try to cut back on drinking, just so you can heal faster. I know it's not easy, but anything you can do to heal those lovely Irish intestines will help you feel better sooner.

The toxins dumped into the system from a leaky gut are what keep the muscles in your calves (and anywhere else) shortened and in pain, so I have read --and had confirmed to me by my gluten-savvy Physical therapist. I have MEGA muscle and joint pain I am trying to overcome.

Best wishes and SLAINTE!

[katrina500]

Wow, leaky gut causing the leg pains. That makes so much sense. Huge thanks for that. I really need to detox properly.

No Irish nectar for me anymore Glad you like our country, I think New York is paradise!

Sl

[T.H.]

A question about your difficulty walking - do you limbs feel kind of, hmm, 'heavy' or 'tired' with that? Just combined with the vertigo, leg pain, and brain fog, it makes me wonder if you are suffering from gluten ataxia. Have you ever gone to a neurologist who is knowledgeable about this?

A small % of celiacs suffer from neurological issues as well as the gut ones - some symptoms are recognized as gluten ataxia, and some I never see mentioned in medical material, but I am meeting more and more celiacs with the issue (like the vertigo). My daughter has this and for a long time, she'd complain about being too tired to do something, her arms and legs were too tired for her to move, that sort of thing. I always thought she was just being lazy (fell AWFUL about that now, obviously). It has turned out to be gluten ataxia - we believe. We have not gone to a neurologist as it looks like there aren't any near us who have any knowledge about this. But symptoms disappear on a completely gluten-free diet, and return when she gets gluten.

Two things that might be of use re: this.

1. There have not been a lot of studies on gluten ataxia and neurological damage. However, one study I saw found neurological problems were still present when gluten levels were low enough NOT to cause gut damage. No studies have been done on what level of gluten is safe for neurological damage (that I've found. I've been asking experts, and so far, none of them know of any, either). Studies have also found that some celiacs make anti-bodies that attack the nervous system when they ingest gluten, on top of those that attack the gut, so this can be completely separate from gut difficulties.

2. Many of the celiacs I speak to who have neurological issues react to lower levels of gluten than the average. Not all, but many. As an example, neither I nor my daughter can eat most gluten-free products, because they contain 20ppm of gluten or less, or our symptoms come back. My daughter can sometimes have a cookie or two of the 'more' gluten-free foods, from companies that test their foods down to 5ppm or less. We found this out through trial and error - I called up all the companies that she was constantly getting sick from, and started to find the pattern, you know? It's been unfortunately born up over time when she's tried to eat some of these gluten-free foods and she just get horribly sick.

The old cutting boards and spoons really got us good - they are porous to gluten, so you can clean all you like, but the gluten is absorbed into the wood and can't be cleaned off. Just like you'd see an oil stain in it when it absorbs that, you know? So contact with that contaminated section of the wood can release a little gluten back onto your food, for quite a while.

We had to drop all the processed gluten-free foods and go to whole foods - fresh veggies, fruits, whole meats (not deli sliced), and then find some safe nuts and beans, as these are often processed with gluten. Grains can be tricky - if you aren't getting some that are tested gluten-free, you might want to try that for a while. A recent study found that a lot of the 'naturally' gluten-free grains can be gluten contaminated. So if they aren't tested, you can't be sure they are gluten-free.

Also, one other question: have you ever kept a food journal or been tested for food allergies? One of my allergies gives me similar symptoms - horrible exhaustion and really spacey/out of it feeling in my head. It turned out to be something that is IN gluten-free products more than regular ones, so going gluten-free made me feel even worse. I get no hives from my allergy, just these other weirdo symptoms.

Many celiacs here have trouble with dairy, soy, or nightshades. Another one that seems to be increasing is problems with corn, or all grains in general (sugar and bamboo are in the grain family too, actually).

I wonder about these in part because of the February thing - out here, March is the beginning of allergy season, and that tends to make any reactions to food allergies worse, if you have any hay fever issues flooding your system.

Also, perhaps YOU haven't changed anything, but a company that you buy from HAS. An added ingredient, a new food with gluten that is now made on the same line and is cc'ing things, a machine moved from a gluten-free room to one that processes lots of gluten. There can be tons of things that can add gluten to a product, and especially if it's not tested for gluten, the only way you know it's a problem is because you are getting sick. For vitamins, processed foods, etc... Might be worth going on that whole foods route for a bit, and then carefully add back in your regular processed foods and see how it goes. Sometimes that's easier than calling all the companies and trying to find out every detail of their processing and what might have changed.

Oh, another thought - has anything changed in your home or work environment from February to March? Many materials can put enough particulate gluten into the air that when you breathe it in, some will get in your throat, you swallow, and blam - you got glutened. Construction materials are one of the big offenders with this - drywall dust and sawdust from plywood both contain gluten, for example. Cat or dog food usually has gluten. Cat litter can, too, and the dust for all of these is usually in the air as you're feeding/scooping.

If someone is baking near a place you got very often, or if, say, you are going to a store at an earlier hour, closer to the time when they might be baking their bread for the day, and you walk by when flour is still in the air and hasn't settled to the ground yet - that could get you.

Hmmm...have you been checked for fibromyalgia or MS, too? It doesn't seem to quite fit, but might have some potential issue. Thyroid difficulties might be a problem, too.

Sorry this is a bit incoherent - just throwing out ideas, here.

So, so sorry you are feeling so awful. I really, truly sympathize. Like I said, I got sicker going gluten free and ...yeah, desperate and tearful describes it well. You think you finally find the answer, and if it doesn't work, or stops working, it can be crushing. I still haven't figured it all out, and I'm 2 years in. But it has slowly been improving. It HAS gotten better. Sometimes because of my doctors, and sometimes because of me, but it's slowly improving.

But you have a start. Lots of virtual hugs and understanding and sympathy from over here - so many of us have been there. Some are still struggling through this, but I truly believe that with everyone helping each other out and talking like this, it CAN get better.

Wish you the best, and hoping you find the answers soon.

Shauna

--

Courage does not always roar. Sometimes, courage is the quiet voice at the end of the day saying "I will try again tomorrow." (Mary Anne Radmacher)

[IrishHeart]

Just have to chime back in...TH (Shauna) has provided you with tons of helpful information!!

and she made me think, too...

I had that same "heavy" legs and arms...dizzy, very brain-fogged, almost "surreal" feeling and feeling "off", actually walking sideways sometimes...like I was drunk. Feeling so exhausted that it seemed impossible to function. That has all stopped since month 3 of being gluten-free, thank God....but it can be very scary.

Gluten-induced ataxia may be it---and even though you are careful to be gluten-free, those products with low levels may be the culprit, as TH suggests.

But, if they were gone..I am wondering

....did you ADD something NEW to your diet in February? vitamins? supplements?

[Ladylene]

Sorry to hear you are suffering Katrina .. I understand how frustrating it can be trying to figure it all out

I'm wondering about your 'neurological' symptoms ie anxiety, depression, brain-fog etc). I did get these symptoms being Coeliac (and rice intolerant), but after I gave up gluten, (and then rice), these symptoms still came in bouts. My digestive system was clearly recovering but I still had sudden attacks of depression, feelings of impending doom, anxiety, agitation and brain-fog, pressure behind my eyes, dizziness and ringing in my ears .. the list goes on. they came suddenly and could last for weeks. At times I was totally suicidal when and had to get my family to 'watch out' for me because I just wanted to escape so badly.

As other have said ... some of it could be 'gluten withdrawal' but I would definitely check to make sure it's not a food intolerance also.

My symptoms got worse when I went gluten-free because many of the products have rice and soy in them. Here is what I did:

I started a food journal and noted down all my foods and then how I felt. I discovered my symptoms started suddenly anything from 20 mins to 2 hours after eating 'soy' products, particularly 'soy lecithin'. After cutting out soy products I have had none of the neurological symptoms (except for a little brain-fog, which is getting less every day). I feel like a new person!

Be encouraged Katrina .. you have answers now and you are on your way to recovery. This is just a season and it will end

[IrishHeart]

DITTO from me on the soy. I avoid it entirely.

[Dr. B]

I have had the same symptoms several years ago and I contributed it to a fungal overgrowth (candida). After going on a candida diet and doing candida cleanse's for many months, all of my dis-eases went away. The paleolithic diet (almost no grains) also works well for me. Grains have proteins that leak through the intestinal walls and can cause an auto-immune reaction.

[katrina500]

I have had the same symptoms several years ago and I contributed it to a fungal overgrowth (candida). After going on a candida diet and doing candida cleanse's for many months, all of my dis-eases went away. The paleolithic diet (almost no grains) also works well for me. Grains have proteins that leak through the intestinal walls and can cause an auto-immune reaction.

[katrina500]

Thanks so much for taking the time to reply, and what you say makes so much sense. Feeling a lot better today. Have cut out everything apart from retaining a sense of humour! Thanks again.

[Korwyn]

Ditto for me on the soy issue too. Even minute amounts of soy trigger a whole ton of neurologic/CNS (myoclonic/muscle fasciculation, hot flashes, tachycardia) and psych issues (panic attacks, depression, insomnia). Soy actually hits me harder and faster at the neuro level than gluten does and takes anywhere from one to two weeks for me to recover from.

[T.H.]

Soy actually hits me harder and faster at the neuro level than gluten does and takes anywhere from one to two weeks for me to recover from.

Do you ever have trouble with citrus/apples/pears, by any chance? I was floored when I found out that the wax coating used on these three uses either casein or soy in the wax to regulate the texture.

shauna