jewi0008

Does anyone else get this?

I get them, too! I don't know what from, though? They appear and then disappear quickly. They are painless. Does anyone that get them have an overall sore mouth, sore oral tissues, sore tongue or sensitive teeth? NOT canker sores...just sore...like irritated sore or burning sore?

jewi:

Let me jump in here.... as you may know, there are three ways to diagnose Celiac or gluten intolerance, blood work, endo/biopsy and positive dietary response. Although you may not have the positive blood work (which can be unreliable), you do have a positive dietary response. Many people here have had negative testing, but quite satisfied with their dietary response.

Further testing with and endoscopy can also look for other issues, which would also be important to rule out. Biopsies can equally unreliable due to the twenty something feet of intestines and not all areas can be sampled.

I can understand your frustration at the inaccurate advise of your doctor, but if I were in your shoes, I would continue with the testing, if for nothing else but a base line test.

That is the best advice I've gotten with regards to this whole thing! I'm going crazy, but you're right...I need some sort of baseline. They already told me that they are also looking for UC and Chrons, in addition to Celiac.

Stanford's Head of GI Dept told me 1 month - 1/2 slice of daily bread.

I didn't do it.

So if you didn't do it, did you still get the Colonoscopy/Endoscopy? And if so, what were the resutls? I'm so pissed off right now with Dr's.

I am very concerned with what I'm reading on here! Someone please help!!!

I got the Celiac Blood tests, which were negative. The same day as the GI requested I get the blood tests, they also scheduled me for an Endoscopy and colonoscopy. He said that as soon as my blood tests were done I could stop eating gluten (I was miserable!). So, I stopped eating all gluten. I have been gluten-free for about 2.5 months now (minus the occassional slip ups and anywhere there is CC) Well, my stomach tests are this upcoming Tuesday. Now I'm worried that because I've been eating well even if I do have something it's not going to show up!

I figured the GI specialist would know what he's talking about. I'm just sick and depressed that I'm doing this for no reason now, since I dont' have gluten in my system!

THOUGHTS?!?!?

So what would you eat on a daily basis? I think I may have this, too.

Sure sounds like candida to me. When I had to kick candida out of my system, I didn't stop eating carbs at all. I stopped sugars, yeasts, vinegars, and fruits. I also began taking caprylic acid capsules. That's basically all I did, and it worked. In a matter of weeks I felt like I had a brand new body. I started adding back fruit over a very long time (years), probably more slowly than necessary, but I didn't want to undo the progress. I've remained off all the other items to this day. But again, carbs I kept eating, and I really ate gobs of it too.

Gemini - You said you have Sjogrens. Do you only have the oral part of Sjogrens or do you have the eye part as well? The reason I've never thought I have Sjogrens is because I don't have red, irritated eyes. My eye twitches a lot and I get floaters, but they don't hurt me or anything. It's just my tongue and mouth that feel dry/irritated. So, since you actually have it,do you know?

Also, you said once going gluten-free it went away BUT that it took a little while. What does "a little while" mean...did it take days, months or years?

Thanks for any and all help you can offer up!!

Gemini, thanks for the message. No, I don't think he's cheating because he REALLY wants to grow and he agreed- we didn't force him. He's the kind of kid that reads science textbooks for fun and has done some research on celiac.

He hasn't been gluten-free very long so the tongue pain may be a holdover from when he was eating gluten. It's possible there are hidden sources but since I prepare 99% of his food and have checked all his personal care products etc., I am pretty sure he's not getting gluten. Plus, we just started the B vitamin supplementation so we will give that some time to work. If the sore tongue doesn't go away I will have him checked for Sjodren's.

~Laura

TrillumHunter - how old are you? This sounds a lot like what I've had for the past 4 years. BUT...I don't think I have anemia, because all of my blood counts CBC come back within range. This is strange, though, because I'm always cold and bruise so easily? What gives?!

Might be a stretch for a young boy....That's the last symptom that showed up before I was diagnosed with severe iron anemia. My serum iron was four. The way you describe it rings a bell for me. It wasn't like a spot was sore, it was the whole tongue. It didn't look red or raw, but it felt swollen. Also, I was having a heard time talking because it really felt like I couldn't control my tongue well. Look at his nailbeds and inner lower eyelid. They should be nice and red, not pale.

Good luck! If you decide to check this out, be sure and get a serum iron and serum ferritin.

Laura,

The B12 and/or B Complex will definitely help him. I take the B Complex. You need to make sure the B12 is methylcobalamin, though, NOT cynocobalamin. I think I might need to up the dosage.

I do not believe your son has that lichen p...I do not have that. You said he has nothing visible in his mouth, correct? Neither do I. That's one part that's hard with these forums is that when you write that his tongue is sore and irritated, people automatically think you mean canker sore sore...that's not what you mean, correct?

Is his pain alleviated by eating or does eating cause him pain? With canker sores and actual sores eating generally causes pain. This is not what I have...does he?!

Thanks Ursa.

Yes, it's a combo B-vitamin. Can't remember all but B12 and Folic for sure.

~Laura

Laura...

PLEASE feel free to PM me if you want to discuss more. But, I am a 25 yold female. I have had this mouth problem for 4 years now...it's so awful. I developed it right after I had my tonsils out. Then, people started telling me that perhaps I have food intolerances/allergies. I'm still not confirmed anything yet.

My mouth constantly feels raw and dry, but the problem, like you said, is that there is nothing actually visible. It's my tongue, the roof of my mouth and anywhere at varying times. It's chronically irritated and frustrated and yes, I have a hard time talking a lot, too! I have upped the vitamins, and some days it subdues, but has never gone away. I have NO IDEA what it is or what it's from.

I would love some advice for Laura's son and I...if anyone has any or knows. I'm currently df, sf, gluten-free, wf.

THANKS!!!

In response to this...sounds a lot like me. How long do all of your periods last now that you are off BC? I feel like in addition to the abnormalities of their frequency, when they do come, they really only last for 2 days and then are pretty much nonexistant. They kind of trickle off for the next 3 - 5 days with nothing really there. Is that normal that they only last that long?!

I didn't get my first period until I was 15 and was very irregular. No horrible cramps or anything though. When on birthcontrol I was regular, but off birthcontrol I can go sometimes 45 days, sometimes 30, then the next time 60 days inbetween. I have gone gluten free off and on for the last 9 months and notice off gluten I am much more regular.

Sidenote, though, I eat quinoa religiously and it is completely fine. There is no gluten in quinoa. And it tastes so good!

I am a 23 year old male and was diagnosed with celiac disease around the first of the year after having an endoscopy. I have done everything I know to eliminate gluten but my symptoms still include constant fatigue, bloating and belching following meals, ataxia, and the need to eat every few hours or I feel faint.

I think that I am having a reaction to other foods and want to go on a basic diet to see if my symptoms improve. From reading this forum the most basic diet seems to consist of only fruit, vegetables, and meat without any rice, quinoa, potatoes, etc. If I eat fruit I get hypoglycemic symptoms so I am going to stay away from fruit for now.

That leaves me with vegetable and meat. My question is can I live completely off of vegetable and meat? I am already rather thin and don't need to loose any weight. Are there certain meets vegetable I should eat more of than others? Where can I find recipes?

Once I gain my health back my plan is to then add in other foods gradually to see what I can tolerate. Thanks for all your help.

I was not getting my period at all..then I went gluten-free. Then I started getting every 45 days about. Then last month it was like 36 days and now this month it came after 22 days? BUT, no real cramps or breast tenderness or anything. Is this normal to get your period this soon and feel this good?!

I always had horrible cramping growing up with my periods I would just curl up into the fetal postion and cry. In my later teens my periods actually stopped and would be gone for a few months at a time. When I got married it was very hard getting pg. because I wasn't ovulating anymore (doc. said) I had to take medicins to make me ovualte and get periods. I was finally diagnosed a year ago with celiac disease and my periods returned to normal without any meds. I still get bloated, pms, and sore breats, and sometime mild cramping (all normal symptoms BTW) but, the pain is not near what it was before. Good Luck! I hope it helps!

Does geographic tongue hurt or annoy you or burn or anything?!

Others with more experience will chime in but to me a positive blood test means you do have active celiac because the antibodies are able to get into your blood stream which happens when you have damaged villa. I also have geographic tongue and it gets worse when I have gluten and citrus fruits especially pineapple. Didn't connect the geo tongue with gluten until recently. I would definately do the diet, it will help with the migraines and other symptoms that I'm sure is a result of your celiac. Good luck and welcome to the board!

Does anyone know the typical timeframe from when you ingest gluten to when the symptoms come? I have been gluten free for almost 2 weeks. I've been eating great. I've been feeling great. Then, all of the sudden on Monday I got sick. I had smelly silent gas all day, a growling stomach and then it was capped off at night by 2 bowel movements of "dark pile." Tuesday morning I was a little gassy; nothing major. And then it all stopped. I wonder if it was something from Saturday or Sunday or before...I have a food journal and I want to try to pinpoint this!!

Thoughts?!

does malodextrin have gluten in it?

I have heard that most maltodextrin in the US is corn based. Therefore, no. That being said, BE VERY CAREFUL. Maltodextrin is not good for us to eat anyways...it's unnatural and I always react to it. I learned this from my overconsumption of Splenda..which, I have completely cut from my diet!

Maybe you could put up a daily food journal for us. I take digestive enzymes and I know they help, but I'd be curious to see what you eat/others eat, as my problems have not completely gone away.

Unfortunately, there hasnt been any changes as far as what foods I can tolerate.

The only difference is that now I have a much better understanding of what needs to be avoided and why I am reacting to so many foods.

All of the things mentioned in the early pages of that thread are problematic for me. I was focusing more on food chemicals rather than the foods themselves. I had read somewhere that most reactions are from the inability to process these chemicals instead of a reaction to the food. It seemed to ring true for me...especially since all of my allergy and food intolerance testing showed nothing....yet I was reacting to *everything*.

Also, my reactions to the various foods were not always consistent. It seemed like I would reach a threshold and I'd feel very toxic...at that point I'd be extremely sensitive to ALL foods as well as perfumes and other chemicals. Basically I'd start reacting to everything and it would take a week or so to settle down.

Certain foods would push me to the limit more than others. The worst offenders are high phenol foods...salicylates, amines, food colorings, preservatives, additives, etc. I also cannot handle high phenol ingredients in skin products.

Even though this is a huge issue I spent less time on worrying about the foods and more time trying to get to the root cause of it all. I was fine for 31 years with no sign of any intolerance to foods or anything else. Chemicals had never bothered me but quite suddenly I was hit with all of this....and it was after two fillings got drilled out.

I had always suspected mercury as the underlying cause but it took a long time to get with some very knowledgeable Dr.'s and to finally have that confirmed. Although I've been exposed to Lyme it didnt turn out to be a major player in my health issues...but it took several months to determine that. I was never treated aggressively for Lyme. I took some antimicrobial herbs for a short time. The Dr.'s said that the Lyme was just kind of hanging on for the ride while my immune system was knocked down a bit.

Candida is a bigger issue for me and I find that the high phenol foods seem to cause flare-ups...as long as I'm careful not to eat those foods the yeast is somewhat under control.

The phenols set off a cascade that seems to create a very toxic environment in my body....and unfortunately all foods contain phenols (some much higher than others) and my tolerance is very low.

I'd been going through chelation for about 5 months but my Dr.'s have now put this on hold because I'm not letting go of the metals. Very little is coming out. Its been consistent in that the same 9 toxic metals are coming out but in amounts that would indicate that either the metals are not a significant problem...or they are trapped because my detox pathways are not functioning as they should.

It was determined that mercury is the main problem and that my body is not letting go of it....so no more chelation for the time being. I had been told early on that there was the possibility of either a genetic weakness or that the toxic burden from the metals was so great that my detox pathways became impaired. At this time they dont have enough info. about genetics to say for certain that there had to be a genetic weakness from the start.

Its basically the same problems they see with Autism. Fortunately for me the Dr.'s I'm working with are very involved in treating Autism and have quite a bit of knowledge in this area. The majority of the ASD kids are also sensitive to phenols. I looked into the Feingold diet a couple years ago and for the most part I've followed that diet and have done very well on it. The diet focuses on salicylates and artifical food chemicals...in addition I also have to avoid amines and high sulfur containing foods.

All of this points to problems with my sulfation pathway....an important detox pathway that is also found to be impaired in over 90% of cases of autism. I need this pathway to be functioning in order to metabolise these food chemicals as well as to detox the mercury, neurotransmitters, certain hormones, etc.

There are specific enzymes in this pathway which are required for processing phenols and all food chemicals. When the enzymes are inhibited these chemicals cannot be metabolised as efficiently and will build up to toxic levels in the body....causing all kinds of inflammation. It also creates a heavier burden on the pathway and as a result more toxins accumulate.

One of the most damaging effects that mercury has is its ability to inhibit or block any enzyme system in the body. Not everybody will be affected the same but if a person is already susceptible due to genetic weaknesses critical pathways may become blocked....and that appears to be the case with me.

Its a chain of events that can lead to impaired detoxification, chronic infections, leaky gut, autoimmune disease, food intolerance, endocrine disorders, etc.

Even though my situation with the foods and chemical sensitivities is severe....I function very well when I'm not overloading my system. I sometimes feel almost normal, I can think clearly, I have energy, I have very little pain, etc. This can all change very drastically if I'm not careful....so my diet is extremely limited.

I'm very determined to overcome this...I have a huge list of foods that I cant wait to eat again!

My Dr. thinks that its possible I've always had problems with my pathway and that my body was always struggling to process high phenol foods without my being aware of it. I may have been "on the edge" for many years until things just got pushed too far. Salicylates are by far the worst offenders for me and they inhibit the enzymes up to 50% under normal circumstances. I'm assuming that if these enzymes were already deficient I may have just got hit with too many things at once with the mercury exposure being the most damaging to my body.

I also need to be metabolising sulfur in order to detox the mercury and currently I dont seem able to handle sulfur...and this also seems to rise to toxic levels.

So thats where I'm at right now. I'm no better with the foods but all of the puzzle pieces are falling into place. My Dr. says that we will get it all figured out and I believe that we will. There are some "glitches" that we need to identify and once we do that she doesnt feel that correcting the problem will be difficult in my particular case.

I'm not 100% gluten free since Xmas...I've been having some gluten here and there. Some products I do better with than others and my reactions are less severe than what I experience with other foods. I take enzymes to help process the phenols (No-Fenol) as well as enzymes to digest gluten, dairy and other proteins (AFP -Peptizyde)....I'm still eating very little of these foods though.

There are alot of enzymes that I havent tolerated but I do really well with these.

I think that after reading your posts I'll try the Serratiopeptidase for addressing fibrin. One of my Dr.'s put me on an enzyme for this but I didnt notice much of a difference and I stopped taking it. Other enzymes were not an option because I did not test well for them (I always have some form of muscle testing to determine which supplements I can tolerate). I was never tested for Serratiopeptidase and it looks like the brand you take isnt derived from a vegetable source....so I think it might work.

Then my goal is to resolve these food issues before you finish the thread!

I know this probably is not what you want to hear...but I had to get my tonsils out because of it...it never did clear up

I also had to get mine removed. I never really get sore throats anymore...it's great! However, after I got them out I started to develop other oral problems. Teeth pain, sore mouth, dry mouth, chronically irritated mouth. Hmmm....

Does anyone know...if you buy a package of coffee and say it's vanilla coffee. The ingredients are 100% coffee and natural and artificial flavorings would this be gluten-free?

I'm concerned my coffee is making me sick!

JLC,

I'd be lost without my blueberries and strawberries. I only eat 4 fruits mainly because of the low sugar content. The berries provide much antioxidant activity and bind with mycotoxins. If one has trouble with them it may be to leaky gut issues caused by gluten or parasites (macroand microscopic).

Heal the gut and then try a few at a time. I have mine frozen so they keep well and are not filled with so much chemical because they will be frozen quickly after harvesting.

ML

...and what 4 fruits are these...the low sugar content ones? I need to start doing that!

Has this ever happened to any of you? I guess it's celiac related, I've gotten accidentally glutened a few times in the past month and am having many other side effects from it as well. (The last time was yesterday at P.F. Chang's.....we're not safe anywhere.)

I have always had a mild version of this, with my eye jumping or eyelid twitching, but it is now happening every day, all day long. At least once every hour and more. It is really bothering me and it's becoming more apparent. No one could notice when it happened before, but now it's almost causing my eyelid to close.

Does anyone know if this a pinched nerve or something else? Should I get it checked out? I don't have any insurance. This is starting to worry me.

The same thing happened to me, but I just got blood tests done for Celiac and they showed that I do NOT have it. Anyways, I agree with the B Deficiency as well as magnesium. I take a B Complex and Cal/Mag/Zinc vitamin every day now....my twitching has, for the most part, gone away.....

But I wonder why, if I don't have Celiac, I am deficient?!?

Gemini--honest, I do not know where I have been, I have never read this before, if you posted it, I must have missed it, I am sorry. For years and years I have had trouble swollowing bread and meats, sometimes to the point of not being able to breathe. Like I said, the doc I work for, who also is my eye doctor, will not even admit to my dry eye being autoimmune. He has not let me try Restatis, only Refresh or Systane. Maybe I will take my insurance and go elsewhere, wouldn't that frost him???? I have never been tested for Sjogrens, even though I have suspected it. I do have Raynauds, which I think is often assoiciated with Sjogrens. Raynauds is a form of arthiritis.

I just found this:

Open Original Shared Link

I can relate to many of these, of course, so can a celiac. Which, I understand, many times, celiac disease and sjogrens can go hand in hand too. So many of the autoimmune diseases do. I may just ask my PCP to be tested for this, just to be sure. Thank you!

Can anyone tell me what blood tests you need for Sjogrens? My mouth drives me CRAZY! I don't know what's wrong with it. Been this way for 4 years. My oral tissues kill. My gums. My teeth. Under my jaw. Sides of tongue. I'm going crazy....

Has anyone ever had a CBC done and it been completely NORMAL yet they still had Celiac?

Wow I have been sleeping alot lately and even after sleeping about 10 - 12 hours a night I am sleeping my days away lately. I have been gluten-free now for almost 2 weeks and just discoved that I can not tolerate any dairy a few days ago. When I am awake I have no energy and want to sleep. I just started on a probiotic and digestive enzymes to try to help with my D a few days ago and yes they are gluten-free. I don't feel sick in any way, other than the usual .....lol.... So I have no idea where or why this is happening to me. Any body have any ideas or advise ??

My poor dogs have gone with out there walks for about 2 weeks and are getting cabin fever. I feel so bad for them as they need to get their exercise and really so do I .

Thumper

Yes, I get this, too. I crash and I crash HARD! Valentines Day I was sleeping at 5:30pm...my fiance was excited about that one! ha ha. Anyways, does your body feel like a dead weight, too? Sometimes I feel like I'm floating when I'm sleeping and nothing can get me up!

It's a vitamin B deficiency. Mine twitched for months. I started taking a B supplement, it went away in a matter of days. It's a symptom because of the malabsorption. Malabsorption=nutrient deficiencies.

Interesting. I have had it for so long. Then, I started with the B Complex and it pretty much disappeared, too. In addition, I have awful mouth problems. My mouth is constantly irritated. My oral tissues drive me crazy. NOT like canker sores or sores just an overall burning, annoying sensation, with occassional extreme teeth pain. This flair also goes down a lot when I'm taking my B Complex. On Friday I forgot to take it and like clockwork yesterday was hell for me. I'm hoping today or tomorrow for some relief!

What B Complex do you take? And does that make sense to you that if I don't take it, for even one day, that all of the twitching/mouth problems, ect would come back full force?