Celiac Sprue & Doctor Too!

[mamabear]

Ann:

You joined us because you have Celiac Disease. You also joined us as a Doctor. You have also been very willing to post in your position as a Doctor, and be informative as much as you can to answer many questions.

I would rather hope, instead of us asking you questions.....the turn-around.

You ask us the questions, to further your knowledge of our experiences. What you learn here, pass it on to your colleagues. Write a paper...you have the subjects.

We want you to stay and not be hammered by dx's questions...

How can we help you get the word out.

Thank for your time and your true dedication.

Lisa

Lisa,

Thanks for your insight! OK....here's a question for us. How many of you all have muscle twitches in your long muscles? Eye twitches are fairly common, but I'm talking about visible movement(fasciculations is the medical term)...rather looks like a gutted fish belly.......My legs(primarily my calves) have been twitching (mainly when I am lying down) since the big onslaught of sprue , and before it was diagnosed. It occurred after major surgery to remove a cancerous kidney. And that is when the sprue went into overdrive. A neuro friend said he had no idea what it was from....I think maybe it's peripheral motor neuropathy, and unfortunately the gluten-free diet hasn't helped. Since it has not progressed into anything MORE ominous, I figure it is from sprue. One article said gluten-free diet did not change the neuropathies... Any one else??...Oh, also the numby/tingly thing but this is visible.

Ann

[Helena]

My sister had some "twitches" in her leg when she was really sick---I couldn't see anything, though. She just said that she felt like her leg was moving slightly. It isn't clear whether her symptoms would all be due to celiac----I think it is definite that she has celiac (seeing as she had the classic symptoms + some not so classic neurological symptoms (vertigo) + "chronic fatigue". She still does have some symptoms but not nearly to the same degree). The celiac, though, was probably triggered by another illness (possibly tick-related as she got bug bites while travelling and then got very ill. But nothing has been diagnosed in her case.)

Ann, I have a question for you if you don't mind us giving out yet more medical advice. I know that sometimes doctors redo the celiac panel to see how their celiac patients are doing on the gluten-free diet (even though the test isn't necessarily an accurate measure). I asked my doctor to do the reverse---to redo the celiac panel after I went back on gluten. I had a positive anti-tTG test when on a nearly gluten-free diet, and after eating barley and oats for a period of time I had the celiac panel redone and the test was more positive---went from a 32 to a 50, whatever that means. EMA was negative both times. My doctor says he doesn't have the results from the first antigliadin test , but the second time the IgG one was positive (however, I have been diagnosed with a wheat allergy, so as I understand it that might result in a positive antigliadin test.)

My GI doc strongly feels that I have celiac. But I'm wondering how other doctors would generally take this. Is an increase in the autoantigens associated with celiac disease in response to gluten being added to the diet a clear indication of celiac even without the biopsy? I did feel rather ambivalent about the decision (which my GI doc was pushing for) to cancel the biopsy. Could I have trouble down the road with credibility because I didn't get an official diagnosis? It's a concern of mine because I have *so many* allergies. If I ever end up in a hospital or somewhere where I'm not in control of my own food, my dietary restrictions really need to be taken seriously. (I do have a letter on hand that my allergist has signed, but still, it is a concern of mine.)

[mamabear]

My sister had some "twitches" in her leg when she was really sick---I couldn't see anything, though. She just said that she felt like her leg was moving slightly. It isn't clear whether her symptoms would all be due to celiac----I think it is definite that she has celiac (seeing as she had the classic symptoms + some not so classic neurological symptoms (vertigo) + "chronic fatigue". She still does have some symptoms but not nearly to the same degree). The celiac, though, was probably triggered by another illness (possibly tick-related as she got bug bites while travelling and then got very ill. But nothing has been diagnosed in her case.)

Ann, I have a question for you if you don't mind us giving out yet more medical advice. I know that sometimes doctors redo the celiac panel to see how their celiac patients are doing on the gluten-free diet (even though the test isn't necessarily an accurate measure). I asked my doctor to do the reverse---to redo the celiac panel after I went back on gluten. I had a positive anti-tTG test when on a nearly gluten-free diet, and after eating barley and oats for a period of time I had the celiac panel redone and the test was more positive---went from a 32 to a 50, whatever that means. EMA was negative both times. My doctor says he doesn't have the results from the first antigliadin test , but the second time the IgG one was positive (however, I have been diagnosed with a wheat allergy, so as I understand it that might result in a positive antigliadin test.)

My GI doc strongly feels that I have celiac. But I'm wondering how other doctors would generally take this. Is an increase in the autoantigens associated with celiac disease in response to gluten being added to the diet a clear indication of celiac even without the biopsy? I did feel rather ambivalent about the decision (which my GI doc was pushing for) to cancel the biopsy. Could I have trouble down the road with credibility because I didn't get an official diagnosis? It's a concern of mine because I have *so many* allergies. If I ever end up in a hospital or somewhere where I'm not in control of my own food, my dietary restrictions really need to be taken seriously. (I do have a letter on hand that my allergist has signed, but still, it is a concern of mine.)

Oh, I feel the same as your GI. And I would imagine he still wants a biopsy to prove it beyond doubt. The antibody testing can be as misleading as the biopsies, so it still makes it tough to decide to do as a patient...less tough for the docs ordering the test. Knowing as completely as you can know, only empowers you in the years to come. As far as I would be concerned, you have it(only false positive I've read in the literature is for lupus... rarely) based on your positive tissue transglutaminase.....the biopsy should complete the picture. I can advise the patients I've known for a long time when they don't want the biopsies done...I know them well and may agree it's in their best interests NOT to do it. I also have seen in my practice that all patients who biopsy for sprue don't always have ALL serologies positive. One of mine only had Antigliadin IgA positive and her biopsy was positive. Having the absolute diagnosis opens up your doctor's eyes to follow you more intensely if things go awry. Hope this helps you to decide. It surely is a confusing condition!!!

[jaten]

OK....here's a question for us. How many of you all have muscle twitches in your long muscles? Eye twitches are fairly common, but I'm talking about visible movement(fasciculations is the medical term)...rather looks like a gutted fish belly.......My legs(primarily my calves) have been twitching (mainly when I am lying down) since the big onslaught of sprue , and before it was diagnosed.

Ann

I used to have leg twitches in my calves and thighs (for me, thighs more than calves), but had never tied this to the Celiac when it was finally diagnosed. Like you, it was almost always when I was lying down, occasionally sitting, but always when my legs were otherwise relaxed. You could watch one specific muscle in either thigh twitch and move (I say either because it rarely happened in both legs at same time) ...we used to laugh about it. I haven't even thought about it in months because it has stopped. Maybe it was Celiac-related!? I've been gluten-free about a year, and I don't remember the last time I had one of those.

(FWIW....now that I think about it, even the visible eye twitches that I used to have almost daily have gone away. Wow! I suppose all those twitches could have been Celiac-related.)

[Helena]

Oh, I feel the same as your GI. And I would imagine he still wants a biopsy to prove it beyond doubt. The antibody testing can be as misleading as the biopsies, so it still makes it tough to decide to do as a patient...less tough for the docs ordering the test. Knowing as completely as you can know, only empowers you in the years to come. As far as I would be concerned, you have it(only false positive I've read in the literature is for lupus... rarely) based on your positive tissue transglutaminase.....the biopsy should complete the picture. I can advise the patients I've known for a long time when they don't want the biopsies done...I know them well and may agree it's in their best interests NOT to do it. I also have seen in my practice that all patients who biopsy for sprue don't always have ALL serologies positive. One of mine only had Antigliadin IgA positive and her biopsy was positive. Having the absolute diagnosis opens up your doctor's eyes to follow you more intensely if things go awry. Hope this helps you to decide. It surely is a confusing condition!!!

Thanks for your input on this. I was hoping that the two blood tests together would be considered definitive, but I guess the aren't. I suppose that's why my GI doc said that he strongly feels that I have celiac (he seems to have the same view of the blood tests as you do) but didn't actually say "you have celiac." <sigh>

Actually, it was my GI doc who suggested that we cancel the biopsy. I raised a question about the accuracy of the biopsy given the fact that I can't eat wheat or rye at all. (I tested positive for wheat allergy with both the skin prick test and the RAST. The allergy test for rye came back negative, but rye makes my throat slightly itchy so I avoid rye too.) No one knows how much gluten is in barley (a "low gluten grain"). My doctor originally said that having "some" barley every other day (for four months) should be fine, but I found out that most GI docs have their patients eating more gluten than that for the gluten challenge! Anyhow, I raised all these issues not because I wanted to cancel the biopsy but because I wanted to make sure that he wouldn't see a negative biopsy as definitive at least in my case.

Then I had issues with the meds. He was doing a colonoscopy too so I was supposed to take over the counter meds which contain corn-based sweetener (sorbitol) (I am allergic to corn--again, the allergy was confirmed by both a skin prick test and a RAST test). My allergist says that no one really knows which corn-derived ingredients are safe for the corn allergic if any. Anyhow, my allergist said to try to find a corn-free alternative--if that was not possible, I was to take the meds in the hospital so I could get help if I had a reaction (anaphylactic shock is what he's worried about here, I think. I haven't reacted *that* severely to corn, but with allergies, one never knows for sure.) When making an extra appointment with my GI doc to discuss this, I thought to ask him about the ingredients of the sedatives/anaesthetic I would be given. He didn't know about the ingredients, but gave me the names of the drugs to research. I was shocked to find that diazemuls contains soy-derived and egg-derived ingredients---if I hadn't said anything, my GI doc would have given those meds. (and I had told him that I'm allergic to egg and soy.) There would be a good chance that I would have anaphylaxed.

Anyways, at this point, my GI doc just said that he recommended cancelling since I wasn't going to trust a negative biopsy and was just going through the procedure "out of curiosity" (his words not mine)---also, I think I mentioned the term "anaphylactic shock" one too many times. I don't think he really understood why I wanted the positive confirmation (I wouldn't call it "curiosity.")

So as of this Sept. I went gluten free.

I imagine all these issues will be revisited if I get another GI doc---my GI doc didn't check out the problem for which I was originally referred to him so I imagine my respirologist (the referring dr.) will send me to someone else for a second opinion.

If and when I see another GI doc, I'll give the issue some thought. Don't know if I can stand eating anymore barley----my GI issues are on the mild side, but barley makes me feel tired and spacey.

[Creative-Soul]

I've been reading and enjoying this thread; as usual, am gleaning great information from this board! And I want to say welcome to the doctors here as well - I'm glad you found us and hope that we can be as much help to you as you have been to us here.

I have a question regarding something that was raised in another thread recently - I've tried to find it but maybe my eyes are just too tired right now - about the neurological symptoms that can accompany Celiac. I was diagnosed by my doctor via elimination diet and a very, very brief (start to a) Gluten challenge (reactions were so severe that he told me to stop, it wasn't worth it). My question is - and anyone can answer here - can these neurological symptoms (see my sig) appear in someone who may (only) be gluten-intolerant?

[nikki-uk]

I've been reading and enjoying this thread; as usual, am gleaning great information from this board! And I want to say welcome to the doctors here as well - I'm glad you found us and hope that we can be as much help to you as you have been to us here.

I have a question regarding something that was raised in another thread recently - I've tried to find it but maybe my eyes are just too tired right now - about the neurological symptoms that can accompany Celiac. I was diagnosed by my doctor via elimination diet and a very, very brief (start to a) Gluten challenge (reactions were so severe that he told me to stop, it wasn't worth it). My question is - and anyone can answer here - can these neurological symptoms (see my sig) appear in someone who may (only) be gluten-intolerant?

I'm sure there are people on this board who don't have the 'main' genes for celiac disease but who are gluten sensitive that had neurological problems. I also think they have HLA DQ1 gene which seems to be associated with more of the neurological effects.

I'm sure someone will chime in

[mamabear]

Thanks for your input on this. I was hoping that the two blood tests together would be considered definitive, but I guess the aren't. I suppose that's why my GI doc said that he strongly feels that I have celiac (he seems to have the same view of the blood tests as you do) but didn't actually say "you have celiac." <sigh>

Actually, it was my GI doc who suggested that we cancel the biopsy. I raised a question about the accuracy of the biopsy given the fact that I can't eat wheat or rye at all. (I tested positive for wheat allergy with both the skin prick test and the RAST. The allergy test for rye came back negative, but rye makes my throat slightly itchy so I avoid rye too.) No one knows how much gluten is in barley (a "low gluten grain"). My doctor originally said that having "some" barley every other day (for four months) should be fine, but I found out that most GI docs have their patients eating more gluten than that for the gluten challenge! Anyhow, I raised all these issues not because I wanted to cancel the biopsy but because I wanted to make sure that he wouldn't see a negative biopsy as definitive at least in my case.

Then I had issues with the meds. He was doing a colonoscopy too so I was supposed to take over the counter meds which contain corn-based sweetener (sorbitol) (I am allergic to corn--again, the allergy was confirmed by both a skin prick test and a RAST test). My allergist says that no one really knows which corn-derived ingredients are safe for the corn allergic if any. Anyhow, my allergist said to try to find a corn-free alternative--if that was not possible, I was to take the meds in the hospital so I could get help if I had a reaction (anaphylactic shock is what he's worried about here, I think. I haven't reacted *that* severely to corn, but with allergies, one never knows for sure.) When making an extra appointment with my GI doc to discuss this, I thought to ask him about the ingredients of the sedatives/anaesthetic I would be given. He didn't know about the ingredients, but gave me the names of the drugs to research. I was shocked to find that diazemuls contains soy-derived and egg-derived ingredients---if I hadn't said anything, my GI doc would have given those meds. (and I had told him that I'm allergic to egg and soy.) There would be a good chance that I would have anaphylaxed.

Anyways, at this point, my GI doc just said that he recommended cancelling since I wasn't going to trust a negative biopsy and was just going through the procedure "out of curiosity" (his words not mine)---also, I think I mentioned the term "anaphylactic shock" one too many times. I don't think he really understood why I wanted the positive confirmation (I wouldn't call it "curiosity.")

So as of this Sept. I went gluten free.

I imagine all these issues will be revisited if I get another GI doc---my GI doc didn't check out the problem for which I was originally referred to him so I imagine my respirologist (the referring dr.) will send me to someone else for a second opinion.

If and when I see another GI doc, I'll give the issue some thought. Don't know if I can stand eating anymore barley----my GI issues are on the mild side, but barley makes me feel tired and spacey.

Wow......after reading this post, I would be satisfied with no biopsy and staying gluten free. Too many potential pitfalls for you with anesthesia.Unless they come up with an anesthetic you should be able to tolerate, I personally would not feel the need to get tissue diagnosis on you. There are researchers looking for even better specific/sensitive tests all the time, and biopsy might become a thing of the past. One advantage of biopsy to me is if you are not responding to the diet;and the biopsies worsen; and immunomodulating drugs are being considered, it would seem to help guide treatment. Maybe they'll get good enough to use serologies for that,too. Isn't the originator of this thread an anesthesiologist? Maybe he'll check in and offer some suggestions for meds that you can use.

[mamabear]

I've been reading and enjoying this thread; as usual, am gleaning great information from this board! And I want to say welcome to the doctors here as well - I'm glad you found us and hope that we can be as much help to you as you have been to us here.

I have a question regarding something that was raised in another thread recently - I've tried to find it but maybe my eyes are just too tired right now - about the neurological symptoms that can accompany Celiac. I was diagnosed by my doctor via elimination diet and a very, very brief (start to a) Gluten challenge (reactions were so severe that he told me to stop, it wasn't worth it). My question is - and anyone can answer here - can these neurological symptoms (see my sig) appear in someone who may (only) be gluten-intolerant?

Did they do the full celiac panel of serologies on you? I have had patients that were first negative with the panel, then(by their choice) stayed on a regular diet, and when symptoms escalated, we retested. 4 of 6 patients retested showed antibody response. None of those had EMA or tTG. They were all celiacs by their symptoms and signs......refused biopsies.....went gluten free and are getting well. I think that gluten intolerance is part of the spectrum of this whole thing. Dr. Isadore Rosenfeld had an article in the Parade magazine this spring. He said celiac disease is 1% of Americans and wheat sensitivity is 30% !! Pretty staggering numbers.......So back to your question, I agree with Nikki-UK. I am personally not aware of any medical articles about it, but it would seem possible. If I get some more time this weekend, I'll check the PubMed website. Oh, the other 2 patients were convinced they would benefit from the gluten-free diet and also went gluten free.

[ckaloha]

I am going to try again, see if my post comes on screen. I tried last night, must have done something wrong.

I'm not a diagnosed celiac, but think I have it. Had a negative blood test which was done after I'd been gluten-free for a couple weeks. What I'm wondering is why the docs are hesitant to diagnose this disease. I have depression, scalp and other location scaly spots, fuzzy-headedness, dry eyes, joint problems, early menopause age 39, family history with 2 nephews and 1 great niece diagnosed with it and possibly a cousin died from it quite a while back. My mom died 8 years ago from stomach cancer. I eat carefully to not get diarrhea, and that used to mean no milk. The main reason I think my doc doesn't diagnose it for me is cuz I am heavy - 220 pounds. I know I went to a dermatologist six years ago for a spot on my forehead hairline, which he burned off and never told me what it was. I am afraid if I go to one now cuz he'll probably say I have dandruff!!! It has been offerred to me to go to a gastroenterologist, but I haven't done that yet. Pretty costly just to get another negative. There are improvements for me on the gluten-free diet, like less need for sleep, but I am still struggling more than I what I would like. It has not been that bad giving up the breads, surprisingly. Wish I'd known that MANY years ago.

Oh, yes, I should say I've been on the gluten-free (I think) for 3 months at the encouragement of my sister, the mother/gramdmother of the three relatives that have it.

[GCEvans]

I am going to try again, see if my post comes on screen. I tried last night, must have done something wrong.

I'm not a diagnosed celiac, but think I have it. Had a negative blood test which was done after I'd been gluten-free for a couple weeks. What I'm wondering is why the docs are hesitant to diagnose this disease. I have depression, scalp and other location scaly spots, fuzzy-headedness, dry eyes, joint problems, early menopause age 39, family history with 2 nephews and 1 great niece diagnosed with it and possibly a cousin died from it quite a while back. My mom died 8 years ago from stomach cancer. I eat carefully to not get diarrhea, and that used to mean no milk. The main reason I think my doc doesn't diagnose it for me is cuz I am heavy - 220 pounds. I know I went to a dermatologist six years ago for a spot on my forehead hairline, which he burned off and never told me what it was. I am afraid if I go to one now cuz he'll probably say I have dandruff!!! It has been offerred to me to go to a gastroenterologist, but I haven't done that yet. Pretty costly just to get another negative. There are improvements for me on the gluten-free diet, like less need for sleep, but I am still struggling more than I what I would like. It has not been that bad giving up the breads, surprisingly. Wish I'd known that MANY years ago.

Oh, yes, I should say I've been on the gluten-free (I think) for 3 months at the encouragement of my sister, the mother/gramdmother of the three relatives that have it.

[ckaloha]

Hi to GCEvans,

Do you know why I cannot see your post? It has my own post in it, but not the response?

Also, welcome to the group! We're bound to learn something.

ckaloha

[grannynanny]

Yes, I have Celiac non-tropical sprue, and I'm a USA trained M.D.

Sorry, but I'm not a GI doc, nor a family practice/ general practioner. I'm "just" an anesthesiologist. And, I can assure you that all the meds we use in anesthesia are gluten-free!

I do know the physiology and molecular biology behind our disease, and I'll be happy to contribute what I can to the conversations, but as you all well know, we as people with CS usually know more than the "average" doc about this problem.

Ask away, I'll be asking you too...

Russ

Russ,

You're not going to believe this, but not only do I have Celiac, I am also Malignant Hyperthermia susceptible! I know the two are completely unrelated, but I just thought I'd share that little item with you. In fact, not only am I MHS, but I founded MHAUS in 1981 and attended the ASA meeting in Chicago in October where MHAUS had a 25th anniversary reception

I don't usually spend a lot of time on this board, but I sure have been all around it this weekend. You can see my posts nearly everywhere, but my complete story was added to the "Tell your complete story here" thread under "Coping (I think -- or maybe post-diagnosis)." Turns out I was glutened yesterday and I haven't been up to doing anything more than sitting in front of the computer ever since.

I think it was my early MH-related experiences with doctors which made me realize (scarey!) that I knew more about it than they did. Those experiences led to my founding MHAUS, but also helped me take charge of my own situation with regard to Celiac. And I think doctors are seeing this more and more with the availability of information on the internet. My generation of doctors tended to be dismissive of anything they didn't know or understand, but your generation seems to be so much more receptive and unguarded. Yea!

Sue

[mamabear]

I am going to try again, see if my post comes on screen. I tried last night, must have done something wrong.

I'm not a diagnosed celiac, but think I have it. Had a negative blood test which was done after I'd been gluten-free for a couple weeks. What I'm wondering is why the docs are hesitant to diagnose this disease. I have depression, scalp and other location scaly spots, fuzzy-headedness, dry eyes, joint problems, early menopause age 39, family history with 2 nephews and 1 great niece diagnosed with it and possibly a cousin died from it quite a while back. My mom died 8 years ago from stomach cancer. I eat carefully to not get diarrhea, and that used to mean no milk. The main reason I think my doc doesn't diagnose it for me is cuz I am heavy - 220 pounds. I know I went to a dermatologist six years ago for a spot on my forehead hairline, which he burned off and never told me what it was. I am afraid if I go to one now cuz he'll probably say I have dandruff!!! It has been offerred to me to go to a gastroenterologist, but I haven't done that yet. Pretty costly just to get another negative. There are improvements for me on the gluten-free diet, like less need for sleep, but I am still struggling more than I what I would like. It has not been that bad giving up the breads, surprisingly. Wish I'd known that MANY years ago.

Oh, yes, I should say I've been on the gluten-free (I think) for 3 months at the encouragement of my sister, the mother/gramdmother of the three relatives that have it.

I think docs are reluctant to label a patient with a disease unless they have specific proof of the same. If you had no serologies or biopsy with which to diagnose, that's a different matter. Celiac is not as easy as diabetes when someone's fasting blood sugars are greater then 125. But if your blood sugar were 120,wouldn't you think you might have a problem?? Medicine is certainly not an exact science....surprise! And being suspicious when you haven't quite nailed it down is important. For you, I would suggest the visit to the GI. Giving up bread is just the start of a gluten free diet. Your symptoms and positive family history suggest the diagnosis, so let us know where you go from here. About half of my patients who have positive serologies/biopsies have normal to above average body size. Any one else have any ideas here?

[Jestgar]

Hi GFMemphis,

I, too, have twitches in my calves. I've also had severe cramping in the long muscles that wakes me up in severe pain. It's gotten quite a bit less frequent since going gluten-free, but I've noticed that if I get a little bit dehydrated, I sometimes get the severe cramps. The twitching seems about the same though. Kinda fun to sit and watch your muscles move on their own.

[Creative-Soul]

GFMemphis,

To make a long story short I have not had any "official" tests done; I just can't afford it, and I don't have insurance. I can barely afford to pay my own doctor as it is, and don't see him half as often as I should. He is a great guy - he lets me pay him via a payment plan; he's the kind of guy that also makes housecalls (in this day and age, who does that anymore)! That's why - knowing my financial situation and that a lot of times you can get false negatives - we thoroughly went over my symptoms/ reactions and my response to the gluten-free diet and the brief gluten challenge that I did (it was brief because of my extreme response - I wanted to die!!!) that he accepted the positive dietary response as enough proof for Gluten Intolerance/Celiac...though I'm not entirely sure which "label" he put on my record...

I also used to get a lot of twitching in my legs... though it's been so long since I had an episode that I almost didn't remember! I used to watch the twitches too!

Thanks for your time and all the great information!

Edit: I'd "accidentally" gone gluten-free over a year ago after getting pretty sick and having to eat super healthily for a while. When I started to add (what I later found out to be glutenous) foods back in I'd get horribly sick, and certain symptoms that had disappeared came raging back, so I just wouldn't eat the offending foods. Only months later, after discovering this site, did I put 2+2 together... my Doctor gave me the diagnosis this past July.

[tiredofdoctors]

I have Neurological Celiac, but the lab which drew my blood did not have the capability for testing for HLA-DQ1!!!!!!! I know I'm negative for 2 and 8 -- but don't know if they did any sub-types of that! I have been referred to a geneticist, and he is actually doing mitochondrial testing. When I return for my follow-up, I do have planned to asked him about testing for HLA-DQ1. I simply would like to know . . . .

I think one of the best articles with regard to Neurological Celiac comes from the 10 International Symposium for Coelic Disease Pathogenesis and Outcomes . . . . My GI doc asked me to send him a few articles on Neurological Celiac and I sent that one as well as a couple more that were from other MD's.

I think that Neurological Celiac is difficult to diagnose first, because it has just come into the "limelight", so to speak, and second, because GI docs used to think that antigliadin antibodies were "nonspecific". Actually, in the 1970's, a physician published an article introducing this theory. Dr. H. has really taken the ball and run with it - to the benefit of a LOT of patients. My personal Neurologist has diagnosed two additional patients after seeing me, simply because they had no "apparent" cause for their ataxia, and he immediately ordered antigliadin antibodies. These individuals, because they were caught so very early in their disease process, are at much higher functioning levels than I am. One only needs a walker, and one doesn't even need that!

If you do not have insurance, perhaps a clinic affiliated with a University would run only the antigliadin antibody tests? This would at least give you an idea of whether your body is producing antibodies to gluten. Then you would know, beyond a doubt, that you need to be gluten-free.

Good luck to you,

Lynne

[mamabear]

Hi GFMemphis,

I, too, have twitches in my calves. I've also had severe cramping in the long muscles that wakes me up in severe pain. It's gotten quite a bit less frequent since going gluten-free, but I've noticed that if I get a little bit dehydrated, I sometimes get the severe cramps. The twitching seems about the same though. Kinda fun to sit and watch your muscles move on their own.

Hi, Jestgar

I found Gatorade helps; tonic water helps;multivitamins help;exercise helps........and I ,too, am fascinated by the spontaneous movements !! Calcium/magnesium/zinc tablets helped awhile, but they are twitching away right now!! However the Ca/Mg/Zn did help the severe charleyhorses I was getting.

GFMemphis,

To make a long story short I have not had any "official" tests done; I just can't afford it, and I don't have insurance. I can barely afford to pay my own doctor as it is, and don't see him half as often as I should. He is a great guy - he lets me pay him via a payment plan; he's the kind of guy that also makes housecalls (in this day and age, who does that anymore)! That's why - knowing my financial situation and that a lot of times you can get false negatives - we thoroughly went over my symptoms/ reactions and my response to the gluten-free diet and the brief gluten challenge that I did (it was brief because of my extreme response - I wanted to die!!!) that he accepted the positive dietary response as enough proof for Gluten Intolerance/Celiac...though I'm not entirely sure which "label" he put on my record...

I also used to get a lot of twitching in my legs... though it's been so long since I had an episode that I almost didn't remember! I used to watch the twitches too!

Thanks for your time and all the great information!

Edit: I'd "accidentally" gone gluten-free over a year ago after getting pretty sick and having to eat super healthily for a while. When I started to add (what I later found out to be glutenous) foods back in I'd get horribly sick, and certain symptoms that had disappeared came raging back, so I just wouldn't eat the offending foods. Only months later, after discovering this site, did I put 2+2 together... my Doctor gave me the diagnosis this past July.

Sounds like you have a smart and compassionate doctor, and you are on the right track. Good luck to you!

[ckaloha]

This is a thank you for the post from Ann. I have made an appt with a GI nurse practitioner, as I could get in with them sooner. It's in about 3 weeks, after Christmas. Till then, I'll just try to be gluten-free and thank everyone and the Lord who helps me. I know I don't have a severe case like my nephew did, but again, I would rather know than just be stumbling along in the dark. The other nephew has a milder case at this point than his brother did. They both live in another state from me, but this is what I gather from talking with my sister and them occasionally.

[tiredofdoctors]

I am going crazy, sorry. Does anyone know - if you kill aspergillis or systemic candida, can you stop being gluten intolerant?

I absolutley can not eat gluten, any sugars including plain fruit, or I think dairy.

Thanks for any help

I had chronic sinusitis for what seemed like AGES! I had taken tons of antibiotics and had been on Prednisone for another condition for a long time. I had also used cortisone nasal spray. My PCP said during a visit that my breath smelled "yeasty". I told him that I thought it did, too, and that my feet didn't have "stinky feet" odor, but smelled like pseudomonas. (I treated wounds -- you can tell that smell!) He said, "No, it's Candida . . pseudomonas is rare." I said, "I KNOW the smell of pseudomonas!" I was lucky that I can banter with him. I also said that sinus cavities were warm, dark, moist places and what better place for pseudomonas to grow? I also said that everything I had taken in the past would contribute to the growth of pseudomonas. I ended up getting probiotic capsules, emptying one into a small amount of cool, purified water (heat and/or Chlorine will kill them), then using the water as a "nasal wash". Within three days, my sinus infection was gone! My "yeasty breath" was gone as well. I continued taking the probiotics by mouth, as well, continued the washes for 7 additional days, and I kind of "de-sugared" during that time, as well.

That being said, it did NOT have any effect on my gluten intolerance . . . . sorry for that part

[Helena]

Wow......after reading this post, I would be satisfied with no biopsy and staying gluten free. Too many potential pitfalls for you with anesthesia.Unless they come up with an anesthetic you should be able to tolerate, I personally would not feel the need to get tissue diagnosis on you. There are researchers looking for even better specific/sensitive tests all the time, and biopsy might become a thing of the past. One advantage of biopsy to me is if you are not responding to the diet;and the biopsies worsen; and immunomodulating drugs are being considered, it would seem to help guide treatment. Maybe they'll get good enough to use serologies for that,too. Isn't the originator of this thread an anesthesiologist? Maybe he'll check in and offer some suggestions for meds that you can use.

I really appreciate the feedback. I think I made the right decision, then---I seem to be responding to the diet so I doubt that immunomodulating drugs would be needed. I just learned, too, that someone else on this board had positive blood tests across the board, went on the gluten-free diet before the biopsy on dr's orders and then had a negative biopsy. Her new drs don't believe she has celiac on account of the negative biopsy. After hearing this, I'm even more convinced that the biopsy would have been a bad idea.

I still might end up undergoing an endoscopy to check for eosinophilic esophagitis if my respirologist refers me to a new GI doc and agrees that this is still worth pursuing. . .but that's another whole story.

[angst2amity]

I ended up getting probiotic capsules, emptying one into a small amount of cool, purified water (heat and/or Chlorine will kill them), then using the water as a "nasal wash". Within three days, my sinus infection was gone!

Thanks for the response, I have been eating probiotics like candy and "de-sugaring" as well. But I never thought of doing a wash! I don't know if it is too late now though, I have severe pain in my mastoid bones and skull base as well as the center of my brain around the expanding r. sphenoid sinus. Had an MRI couple days ago, waiting to hear. Sinus surgery in 3 days, wouldn't it be nice if they could do a fast culture and then splash around a probiotic paste!

[tiredofdoctors]

I was VERY surprised that it worked. I was skeptical . . . as I usually am! At one time, I had a PCP who told me that, because for 3 weeks I had been having a headache in one area in the left front -top of my head, that I could have an aneurysm, and I needed to go to a neurologist!! So I go . . . and he puts me on elavil and neurontin -- and I have NO CHANGE in symptoms for WEEKS. Then, a friend tells me to see the ENT for whom her sister works -- he is an excellent diagnostician, and could tell me what's wrong. He looks at my MRI and says, "What are they doing for that sinus infection?" I asked him "WHAT?" He points to this big area over my left eye -- it's kind of big, and it looks like it's pushing my brain back. He said, you have so much infection, it's actually placing pressure on your brain . . . that's why you have the headache where you do." He gave me antibiotics, nasal spray, decongestants -- I was headache-free within three days! I had been told that I needed sinus surgery because of scar tissue that had built up -- he is very ANTI-surgery. He said that it would just create additional scar tissue, and would offfer no change in my symptoms. That's when I changed PCP's and the new guy started talking about yeast.

Before I underwent surgery, I'd try the nasal wash. I was shocked that it worked. I thought it was going to be one of those things that was good in theory, but in practical use was rediculous. Oddly, a few weeks ago I saw my allergist/immunologist and was telling him about this, and he said, "I have a secretary with chronic pseudomonas in her sinuses." I told him to tell her about the nasal wash, and he said, "Do you know what the ENT's around here would say to me if they knew I told someone to actually put PRO-biotics in their sinus cavities when they are prescribing ANTI-biotics????" I used the dark, warm, moist analogy, and he said that it made perfect sense. He said he may tell her that a patient did it, but wouldn't SUGGEST it!

Good luck to you . . . I know the whole yeast-thing isn't easy. Been there, done that!

[Creative-Soul]

I have Neurological Celiac, but the lab which drew my blood did not have the capability for testing for HLA-DQ1!!!!!!! I know I'm negative for 2 and 8 -- but don't know if they did any sub-types of that! I have been referred to a geneticist, and he is actually doing mitochondrial testing. When I return for my follow-up, I do have planned to asked him about testing for HLA-DQ1. I simply would like to know . . . .

I think one of the best articles with regard to Neurological Celiac comes from the 10 International Symposium for Coelic Disease Pathogenesis and Outcomes . . . . My GI doc asked me to send him a few articles on Neurological Celiac and I sent that one as well as a couple more that were from other MD's.

If you do not have insurance, perhaps a clinic affiliated with a University would run only the antigliadin antibody tests? This would at least give you an idea of whether your body is producing antibodies to gluten. Then you would know, beyond a doubt, that you need to be gluten-free.

Good luck to you,

Lynne

Ann: Thank you, and all the best to you as well!

Lynne: Please bear with me if my thoughts don't seem coherant; I've been reacting to goodness-knows-what all day, so I'm sick and can't think straight! Would those antibody tests require that I eat gluten again? If so...no thank you! Even if they don't, I don't need tests to know that I need to be off gluten; my body and mind have made it perfectly clear that 'we' are much happier and well-off without that poison in my system!!! I really appreciate your advice - please don't think otherwise - and would love to see those articles that you mentioned, actually...

[SillyBoo]

I just want to offer a little balance to the Dr. debate. I know that many have been VERY frustrated with their docs, and had a tough time getting diagnosed. But I would like to voice my deep appreciation for my family practice doc who decided to test me for Celiac. In response to 9 months of increasing crushing fatigue, repeated bouts with mild "viral" cruds, and the fact that cutting out wheat had helped my sinus problems, she tested me for Celiac within weeks after I first talked with her about my symptoms. Yeah!!

Welcome Russ, and all other docs who care to join us!