I'm Frustrated With Self-diagnosis

[Trillian]

I know this goes against what most people preach on this forum and I'm not looking to get my hand slapped...

I've been sick with a lot of traditional Celiac symptoms for years and have had lots of secondary diagnoses: eczema, gerd, migraine, constipation, bone pain, hives, year round allergies, lactose intolerance, etc. And I also have larger problems (I'm 37) of reoccurring anemia and osteoporosis. My general doctor put 2 and 14 together a few months ago and suggested that I might have Celiac so she ran 2 of the blood tests which both came up negative. She sent me to a GI who decided to do an endoscopy since I had all the symptoms. That came back negative.

I went on the diet anyway and my secondary symptoms are gone... I've been glutened a few times and had the devastating effects that you all have mentioned here on the board - distended belly, big D, headache, brain fog, rash, leg cramps, etc. That's pretty telling, right? My doctors agree and say that I have self-diagnosed Celiac. What? Why is that self-diagnosed? (The GI doc said that I might have IgA deficiency and the endoscopy could have been false neg.) I had the endoscopy in September and on Wednesday I got a letter than confirmed the doctors think I'm self-diagnosed.

I've been on mega-doses of iron and vitamin D to see if my gut is now absorbing them and if my anemia will go away and my bone mass will improve. The doctors are fairly positive this will happen because they support my "self-diagnosis."

Doesn't this seem like it should be gluten intolerance instead of Celiac? But if it isn't Celiac, then I wouldn't have the malabsorbtion problem with iron and vitamin D. I'm hoping that the iron and D do start absorbing so my anemia and osteoporosis heal, so I'm hoping it is Celiac.

I'm frustrated because I guess I don't trust self-diagnoses as much as doctor-confirmed diagnoses. And I can't believe my doctors are 100% confident that my gluten-free diet test means I have Celiac in spite of the negative blood and endoscopy tests.

[ravenwoodglass]

I know this goes against what most people preach on this forum and I'm not looking to get my hand slapped...

I've been sick with a lot of traditional Celiac symptoms for years and have had lots of secondary diagnoses: eczema, gerd, migraine, constipation, bone pain, hives, year round allergies, lactose intolerance, etc. And I also have larger problems (I'm 37) of reoccurring anemia and osteoporosis. My general doctor put 2 and 14 together a few months ago and suggested that I might have Celiac so she ran 2 of the blood tests which both came up negative. She sent me to a GI who decided to do an endoscopy since I had all the symptoms. That came back negative.

I went on the diet anyway and my secondary symptoms are gone... I've been glutened a few times and had the devastating effects that you all have mentioned here on the board - distended belly, big D, headache, brain fog, rash, leg cramps, etc. That's pretty telling, right? My doctors agree and say that I have self-diagnosed Celiac. What? Why is that self-diagnosed? (The GI doc said that I might have IgA deficiency and the endoscopy could have been false neg.) I had the endoscopy in September and on Wednesday I got a letter than confirmed the doctors think I'm self-diagnosed.

I've been on mega-doses of iron and vitamin D to see if my gut is now absorbing them and if my anemia will go away and my bone mass will improve. The doctors are fairly positive this will happen because they support my "self-diagnosis."

Doesn't this seem like it should be gluten intolerance instead of Celiac? But if it isn't Celiac, then I wouldn't have the malabsorbtion problem with iron and vitamin D. I'm hoping that the iron and D do start absorbing so my anemia and osteoporosis heal, so I'm hoping it is Celiac.

I'm frustrated because I guess I don't trust self-diagnoses as much as doctor-confirmed diagnoses. And I can't believe my doctors are 100% confident that my gluten-free diet test means I have Celiac in spite of the negative blood and endoscopy tests.

I think the confusion is because of the terms he used. What you have done is an elimination and a challenge. The elimination resulted in a resolution of your symptoms and the challenge made them reoccur or get worse. This really is a valid form of diagnosing a problem with gluten especially when lab tests confirm malabsorption, anemia and osteoporosis. It was the way I was finally diagnosed. You've got a good doctor there by the way, he's a keeper.

[hayley3]

Anybody can be a doctor in this day and age. All you have to do is know how to order blood work and xrays. The majority of doctors rely totally on blood work or diagnostic tests, and if it's not on a piece of paper telling them what it is, they don't know. (Does it sound like I'm bitter, yep)

All I can say is thank goodness for the internet, or you might not know what you have at all. I know I wouldn't. The malabsorption problems have to be Celiac.

It seems like the diagnostic tests must not be catching everyone who actually does have Celiac. Or the tests are accurate but somewhere along the line the test gets screwed up.

There are so many sick people these days who go from doctor to doctor to doctor. I know I did.

Susie

I know this goes against what most people preach on this forum and I'm not looking to get my hand slapped...

I've been sick with a lot of traditional Celiac symptoms for years and have had lots of secondary diagnoses: eczema, gerd, migraine, constipation, bone pain, hives, year round allergies, lactose intolerance, etc. And I also have larger problems (I'm 37) of reoccurring anemia and osteoporosis. My general doctor put 2 and 14 together a few months ago and suggested that I might have Celiac so she ran 2 of the blood tests which both came up negative. She sent me to a GI who decided to do an endoscopy since I had all the symptoms. That came back negative.

I went on the diet anyway and my secondary symptoms are gone... I've been glutened a few times and had the devastating effects that you all have mentioned here on the board - distended belly, big D, headache, brain fog, rash, leg cramps, etc. That's pretty telling, right? My doctors agree and say that I have self-diagnosed Celiac. What? Why is that self-diagnosed? (The GI doc said that I might have IgA deficiency and the endoscopy could have been false neg.) I had the endoscopy in September and on Wednesday I got a letter than confirmed the doctors think I'm self-diagnosed.

I've been on mega-doses of iron and vitamin D to see if my gut is now absorbing them and if my anemia will go away and my bone mass will improve. The doctors are fairly positive this will happen because they support my "self-diagnosis."

Doesn't this seem like it should be gluten intolerance instead of Celiac? But if it isn't Celiac, then I wouldn't have the malabsorbtion problem with iron and vitamin D. I'm hoping that the iron and D do start absorbing so my anemia and osteoporosis heal, so I'm hoping it is Celiac.

I'm frustrated because I guess I don't trust self-diagnoses as much as doctor-confirmed diagnoses. And I can't believe my doctors are 100% confident that my gluten-free diet test means I have Celiac in spite of the negative blood and endoscopy tests.

[TestyTommy]

Most doctors are idiots. Greedy idiots.

Both the blood test and endoscopes/biopsies have a high number of false negatives. The blood test assumes you're eating 10 pieces of bread per day; if you're not, you'll probably test negatives. Biopsies are random pokes into your intestines. If they happen to miss the damaged areas, the test is negative.

The real test for celiac disease is whether you get better when you stop eating gluten.

[Trillian]

I think the confusion is because of the terms he used. What you have done is an elimination and a challenge. The elimination resulted in a resolution of your symptoms and the challenge made them reoccur or get worse. This really is a valid form of diagnosing a problem with gluten especially when lab tests confirm malabsorption, anemia and osteoporosis. It was the way I was finally diagnosed. You've got a good doctor there by the way, he's a keeper.

Raven,

I've poured over so many postings on this site and I'll agree that I've got a good team of doctors. I'm happy to hear that you came to the diagnosis the same way I did. I guess it gives me a sense of validation.

Thank you for taking time to reply.

[Trillian]

Anybody can be a doctor in this day and age. All you have to do is know how to order blood work and xrays. The majority of doctors rely totally on blood work or diagnostic tests, and if it's not on a piece of paper telling them what it is, they don't know. (Does it sound like I'm bitter, yep)

All I can say is thank goodness for the internet, or you might not know what you have at all. I know I wouldn't. The malabsorption problems have to be Celiac.

It seems like the diagnostic tests must not be catching everyone who actually does have Celiac. Or the tests are accurate but somewhere along the line the test gets screwed up.

There are so many sick people these days who go from doctor to doctor to doctor. I know I did.

Susie

Susie,

I got the diagnosis, but I do feel lost at this point. It's nice to have a confirmation and have the doctors assure me that my anemia and osteoporosis will clear up as I stop eating gluten (I'm gluten free 2 months now! Yeah!). But they just leave me hanging after the diagnosis. I've gotten most of my info about living with celiac from this forum, a few books, and accidental glutening (ouch!). I know my doctors were good to catch it in spite of negative results - even if it took years, but there was no follow-through after the diagnosis. With cancer, they give all kinds of follow-through, but with celiac? I got a "sorry you've got this life-long thing, come back in 10 weeks to see us about the anemia and come get a dexa scan in a year," and then nothing.

[Trillian]

Most doctors are idiots. Greedy idiots.

Both the blood test and endoscopes/biopsies have a high number of false negatives. The blood test assumes you're eating 10 pieces of bread per day; if you're not, you'll probably test negatives. Biopsies are random pokes into your intestines. If they happen to miss the damaged areas, the test is negative.

The real test for celiac disease is whether you get better when you stop eating gluten.

Testy,

Mostly I was hoping they'd at least tell me if it was Celiac compared to gluten intolerance because of the negative tests - there's such a big difference health-wise. But they ignored my suggestion of gluten intolerance as if it wasn't a viable suggestion. I suppose I'll be totally convinced if the anemia and osteoporosis clears up.

[Janeti]

Dear TestyTommy,

I'm with you. I think that the Drs are idiots, I haven't seen one that impressed me yet. Last Christmas at this time I ws so sick, I could barely make it out of bed most days.

At the beginning of Nov, I went to see a new GI Dr. He scheduled me for an endoscopy for Dec 28th. Even though I went crazy going from place to place, collecting blood work from various places, and getting the pathology report of my gallbladder that was taken out 12/06, he did not even want to look at it. HE TOLD ME TO START EATING GLUTEN UNTIL THE ENDO NEXT MONTH!!!!! Is that nuts or what?? I will not do that. When it comes time, I will not say anything because I really want to know if the villi is healing, and what it look like down there.

I 100% agree with you....Thank goodness for this website!!

[hathor]

If you want a test to confirm your problem with gluten, you can always go with Enterolab. It is supposed to be more sensitive than blood tests and will work up to a year after going gluten-free. You can also do the testing each year to see if your malabsorption and antibody levels improve.

[ravenwoodglass]

Testy,

Mostly I was hoping they'd at least tell me if it was Celiac compared to gluten intolerance because of the negative tests - there's such a big difference health-wise. But they ignored my suggestion of gluten intolerance as if it wasn't a viable suggestion. I suppose I'll be totally convinced if the anemia and osteoporosis clears up.

Whether it is 'celiac' or gluten intolerance is really a moot point. Technically I am considered gluten intolerant because I lack the US recognized genes for celiac. If you take a look at my signature you will clearly see that my 'gluten intolerance' lead to some pretty nasty diseases and I don't even have some of them listed. Whether you are celiac or gluten intolerant you still need to strictly comply with the diet. One note of interest that I found recently, they did a test in a nursing home with the gluten free diet on dementia patients. 54% of them improved on the gluten free diet but only 30% showed positive on blood testing. Negative tests are not always a sure sign that gluten isn't a problem and the belief by doctors that they are cost me 15 painfilled years that I can never get back.

[lonewolf]

Testy,

Mostly I was hoping they'd at least tell me if it was Celiac compared to gluten intolerance because of the negative tests - there's such a big difference health-wise. But they ignored my suggestion of gluten intolerance as if it wasn't a viable suggestion. I suppose I'll be totally convinced if the anemia and osteoporosis clears up.

I agree with Raven. Don't be so quick to think there's a big difference. I believe that Celiac Disease is the only sub-category of gluten intolerance that they can actually test for, so doctors think that it's the only gluten associated problem. My kidneys seem to be damaged by gluten (as well as some digestive issues and other autoimmune problems), but since I don't have the correct genes, I "can't" have celiac disease. Let me tell you, kidney failure is every bit as serious as any Celiac related problem. I've been able to get my kidney disease into remission by being fanatically gluten-free.

[Fiddle-Faddle]

I agree with Raven and Lonewolf: I believe gluten intolerance is just early-stage celiac disease. There are people with biopsy-confirmed celiac disease who do NOT have the supposedly necessary genes.

It's totally a moot point.

The good part about self-diagnosis is that insurance can't turn you down (some people here have been officially turned down for health and/or life insurance BECAUSE of the celiac diagnosis.)

[Trillian]

I agree with Raven. Don't be so quick to think there's a big difference. I believe that Celiac Disease is the only sub-category of gluten intolerance that they can actually test for, so doctors think that it's the only gluten associated problem. My kidneys seem to be damaged by gluten (as well as some digestive issues and other autoimmune problems), but since I don't have the correct genes, I "can't" have celiac disease. Let me tell you, kidney failure is every bit as serious as any Celiac related problem. I've been able to get my kidney disease into remission by being fanatically gluten-free.

Liz,

WOW, I had no idea that gluten could affect kidneys.

I have a list of health related problems that have cleared up in the last two months, and I'm still in the stunned-phase. I can't believe, after all these years of going to various doctors, that my neurological, allergy, and pain issues have connections to my diet and have significantly improved since I went gluten-free. Those are my obvious issues, I'm sure that kidney problems start out unrecognizable and the symptoms only appear after significant damage? I hope you're feeling okay now.

[Trillian]

I agree with Raven and Lonewolf: I believe gluten intolerance is just early-stage celiac disease. There are people with biopsy-confirmed celiac disease who do NOT have the supposedly necessary genes.

It's totally a moot point.

The good part about self-diagnosis is that insurance can't turn you down (some people here have been officially turned down for health and/or life insurance BECAUSE of the celiac diagnosis.)

Fiddle-faddle,

With all the other diseases, life insurance is beyond reach anyway. Celiac would just add to it. I'm so overwhelmed right now thinking about how Celiac may have caused my other health issues and (here's that big IF statement), if we had caught it in time, I wouldn't have so many other things wrong with me and I'd be able to get life insurance.

[Trillian]

Whether it is 'celiac' or gluten intolerance is really a moot point. Technically I am considered gluten intolerant because I lack the US recognized genes for celiac. If you take a look at my signature you will clearly see that my 'gluten intolerance' lead to some pretty nasty diseases and I don't even have some of them listed. Whether you are celiac or gluten intolerant you still need to strictly comply with the diet. One note of interest that I found recently, they did a test in a nursing home with the gluten free diet on dementia patients. 54% of them improved on the gluten free diet but only 30% showed positive on blood testing. Negative tests are not always a sure sign that gluten isn't a problem and the belief by doctors that they are cost me 15 painfilled years that I can never get back.

Raven,

I've been to neurologists, physical therapists, endocrinologists, etc. - just as I've read that a lot of people on this forum have... I'm lucky I only have anemia and osteoporosis and not another autoimmune disease. I'm so sorry you have to accommodate for that because, I guess, that you weren't diagnosed with celiac early enough.

I've been trying so hard not to get glutened. I've been out to eat only a few times. We have a mostly gluten-free house. I do most of the cooking. Unfortunately, dh made stew yesterday and somehow I got glutened. I'm scared out of my mind that I'm going to get glutened again. I guess it's overwhelming for me because I've got to get rid of the anemia and osteoporosis and I know that the only way I can do that it to completely heal... it's so so so hard.

Thanks for the support!

[Trillian]

If you want a test to confirm your problem with gluten, you can always go with Enterolab. It is supposed to be more sensitive than blood tests and will work up to a year after going gluten-free. You can also do the testing each year to see if your malabsorption and antibody levels improve.

Hathor,

I read on this forum that Enterolab almost always produces positive results - even in people without Celiac. Have you heard this? Besides this, I know that it is really expensive. I'm not sure if insurance covers it. I'll have to do more research. It would give me a sense of validation. Thank you for the suggestion!

[lonewolf]

Liz,

WOW, I had no idea that gluten could affect kidneys.

I have a list of health related problems that have cleared up in the last two months, and I'm still in the stunned-phase. I can't believe, after all these years of going to various doctors, that my neurological, allergy, and pain issues have connections to my diet and have significantly improved since I went gluten-free. Those are my obvious issues, I'm sure that kidney problems start out unrecognizable and the symptoms only appear after significant damage? I hope you're feeling okay now.

I actually feel really great now. I have a type of kidney disease that goes through periods of remission and relapse (usually with large doses of medication) and doesn't cause serious damage for years. I've been steroid free for 3 years now and feel very healthy. I had a large list of health problems and all of them have cleared up except psoriasis, so I'm a walking, talking advertisement for a gluten-free diet - even if you don't officially have celiac disease.

[byrmanson]

I've done a ton of research on the tests, and they all have plenty of room for error (false negatives), which it sounds like your doctor has mentioned. The only fool proof and 100% accurate test is to try the gulten free diet for changes in your body. Don't know why your docs feel the need to call that a "self-diagnosis." Guess they have to cover their "@(#& since modern medicine can't spot it 100%?

[ravenwoodglass]

Raven,

I've been to neurologists, physical therapists, endocrinologists, etc. - just as I've read that a lot of people on this forum have... I'm lucky I only have anemia and osteoporosis and not another autoimmune disease. I'm so sorry you have to accommodate for that because, I guess, that you weren't diagnosed with celiac early enough.

I've been trying so hard not to get glutened. I've been out to eat only a few times. We have a mostly gluten-free house. I do most of the cooking. Unfortunately, dh made stew yesterday and somehow I got glutened. I'm scared out of my mind that I'm going to get glutened again. I guess it's overwhelming for me because I've got to get rid of the anemia and osteoporosis and I know that the only way I can do that it to completely heal... it's so so so hard.

Thanks for the support!

I went that route also, I had many painful tests including nerve conduction (where they stick needles in your body then run a current through to see if the nerves fire, my legs didn't) spinal taps (they were sure I had MS till those were done). One idiot neuro even said that the nerve damage was because I drank for a year at 16 when my twin died. I was 40 then.

My doctors never did any urinalysis for years and my kidney damage wasn't caught until after diagnosis. The only time my kidneys seriously act up is when glutened or if I go real heavy on protein. Then they bleed noticeably and I pee 'beer' (foamy urine).

I went into remission for almost every disorder I had within the first year gluten free, even with a lot of slip ups. Keep with it.

I do have one more note about enterolab. Most of the folks that go to them are in the same boat you and I were. I did not use enterolab for gluten problems, why waste money when my body was telling me all I needed to know, I used them 4 years later when I had trouble recovering from a bout of diverticulitis. They pinpointed soy and casien as a problem and after eliminating both I am now digesting my food again. It is not surprising that they have a lot of positives, gluten issues are keeping many people in this country sick. Whether that illness is GI related, mental illness, fibro, CFS, balance issues (ataxia), skin problems.... well the list goes on of disorders and disease that gluten contribute to or cause. In our pharmasociety if it can't be cured by a pill the doctors are not interested. Enterolab does give negative results, people here have reported them and I had a negative result for eggs and yeast.

[hathor]

Hathor,

I read on this forum that Enterolab almost always produces positive results - even in people without Celiac. Have you heard this? Besides this, I know that it is really expensive. I'm not sure if insurance covers it. I'll have to do more research. It would give me a sense of validation. Thank you for the suggestion!

I've never seen any evidence that Enterolab produces a significant number of false positives. People who go to them, of course, generally have some symptoms, so a higher positive rate than would be true of the general population would be expected. Also, people who test negative aren't likely to participate much on this forum, are they I have heard of negative results, though.

I've seen people who test positive, then go back a year later having been gluten-free and their antibodies are lower and their malabsorption scores are down.

Beyond anecdotal evidence, this is the only discussion of statistics I've seen:

"Here

[grommet]

Hi Trillian,

I agree with Ravenwoodglass and lonewolf that I wouldn't be too quick to dismiss the fact that you cannot have malabsorption symptoms with gluten intolerance.

I too am self diagnosed after having neg bloods and biopsy i.e. I respond when to the diet I've suffered joint pain, migraines, miscarriages, brain fog, depression for many years. All gone when gluten-free. I take multivitamins, iron, vitamin B complex, and magnesium (for the migraines) and call certainly tell when I'm not absorping after a glutening incident - if you know what I mean

You may want to read the stuff below. I found it very interesting particularly questioning functional or pathological symptoms. It was posted on the UK based board.

Re: Non-coeliac gluten sensitivity

I have some notes on this which may be helpful.

There appears to be more than one type of “Non-Coeliac Gluten Sensitivity”. Most commonly an IBS-like, functional bowel disorder which causes symptoms which are dose related. These people feel better avoiding wheat but do not have to avoid all traces of gluten. But there are also individuals (fewer in number) who appear to be as sensitive to gluten as diagnosed coeliacs, but for whom, for the time being, celiac disease has been ruled out as their blood and biopsy tests are all normal. This group may have a suggestive family history (auto-immune disorders, celiac disease in relatives) indicating that they have the genes that predispose to celiac disease, but they cannot currently get a satisfactory clinical diagnosis or support at present. This is not surprising. The understanding of celiac disease has come so far, so quickly, from a very rare disease that affects very ill, usually Irish, children, to being recognized as the most common inherited disorder in the western world, affecting even apparently ‘healthy’ adults. Along side this is the inexorable rise of IBS-type functional (ie not pathological) disorders which may also be diet related not to mention fashionable, faddy or weight-loss diets. How 'true' coeliac disease and other ‘functional’ (ie non-harmful) gut conditions may interact is only just starting to be looked at. Almost certainly in the future the idea of a Coeliac Spectrum will gain acceptance (pioneers of this idea are already promoting this) which will include a bigger range of ‘non-classical gluten sensitivity’. (See below for refs on this).

Until then you are a bit on your own although you will find there are increasing numbers of people in the same position. You may well decide just to go on a gluten-free diet. However there are things that could do to help you decide whether other investigations/treatment are needed, whether you might be part of the ‘coeliac spectrum’ and therefore need to follow a strict diet, or whether more modest dietary and /or lifestyle changes are enough for an improvement in health.

Firstly you should pursue with your doctors any other causes to eliminate other very serious conditions like Inflammatory Bowel Disorders (Crohn’s, colitis) and of course bowel cancer (especially if you are over 40) which may require other investigations (eg colonoscopy). Less serious conditions like Small Bowel Bacterial Overgrowth and Pancreatic Insufficiency should also be considered – these are both found in people with IBS as well as celiac disease and can be treated with remarkable results. Note that some of these conditions are also hard to diagnose and some may also appear to respond to a gluten/wheat-free/low carb diet.

Does gluten/wheat causes you functional or pathological symptoms ie is it harming you in any other way? Does gluten just cause pain, wind, bloating, diarrhea (in the way that lactose intolerance does) or is it affecting your immune system and/or causing some form of malabsorption? Results of other blood tests can help here. Do you have unexplained anaemia, low B12, ferritin or abnomal liver or pancreatic blood results? Other autoimmunbe antibodies? Have you ever had an abnormal bone scan or unexplained fractures? Normal results would suggest a functional problem while abnormal tests may need further investigations.

Do you or other people in your family have related auto-immune disorders? If so repeat testing in the future may be appropriate. You could also undertake a gene test, which you will probably have to pay for but could either eliminate the possibility of coeliac disease or make it clearer that your problem with gluten may be genetic. You could also pay for a IgG test (while eating gluten) which while not very specific will also pinpoint a real problem with wheat.

Are symptoms dose related – eg more wheat, more diarrhoea? If you stop eating gluten for eg 2 weeks and then slowly reintroduce small amounts is the reaction still as bad? Yes to the first and No to the second might indicate a functional problem. BTW do not underestimate the ‘nocebo’ effect: it is perfectly possible for foods that you think are making you ill, to make you feel ill (pseudo-allergic reactions). Do several blind test using foods that have been prepared with similar tasting gluten-free and normal flours, breadcrumbs or pasta (eg cheese sauce, gravy, lasagne).

If your conclusion is a functional problem I do suggest doing some research on IBS. There are some very good websites offering very practical advice.

If you conclude that the problem really is specifically gluten there are two very good websites I suggest looking at, by Dr Scott Lewey in the US (The Food Doc) and Dr Rodney Ford in New Zealand (Dr Gluten) which will give you a lot of information, including medical refs (they are both clincians), and put you in touch with many other people “diagnosed” with “non-coeliac gluten sensitivity”:

Open Original Shared Link

Open Original Shared Link

Refs:

1: Clin Gastroenterol Hepatol. 2007 Jul;5(7):844-50. Epub 2007 Jun 5.Links

Predictors of clinical response to gluten-free diet in patients diagnosed with diarrhea-predominant irritable bowel syndrome.

Wahnschaffe et al, University Hospital Ernst Moritz Arndt Universität Greifswald, Greifswald, Germany.

Open Original Shared Link

Conclusions: Celiac disease-associated serum IgG and HLA-DQ2 expression can identify likely responders to gluten-free diet in d-IBS patients.

Gluten sensitivity confirmed by genetics and blood tests in irritable bowel syndrome, Dr. Scot Lewey

Open Original Shared Link

I have found many but not all of my patients with suggestive symptoms of gluten sensitivity who have “normal” celiac blood work have elevated stool gliadin IgA antibodies (Enterolab), with or without elevated tissue transglutaminase IgA antibodies, especially those with HLA DQ2 or DQ8. These individuals invariably respond to a gluten free diet. I myself am such a person. I have also found many of these individuals have intestinal biopsies demonstrating increased numbers of intraepithelial lymphocytes, the earliest finding in celiac disease.

We believe that the presence of an elevated serum gliadin antibody is indicative of gluten sensitivity in most people. We concede that such individuals often do not have “true celiac disease” as it is now strictly defined by presence of HLA DQ2 or DQ8, a positive IgA endomysial antibody test or tissue transglutaminase IgA antibody with characteristic small bowel biopsy. However, our experience is that such individuals commonly present with symptoms identical to those with celiac disease and these symptoms respond to a gluten free diet. Now, researchers from Germany provide their scientific data that validates what we have observed and have been writing about. In the July 2007 issue of Clinical Gastroenterology and Hepatology, Wahnschaffe et al., from Germany report that gluten sensitivity causes symptoms meeting criteria for diagnosis of diarrhea predominant irritable bowel syndrome (d-IBS) that responds to a gluten-free diet.

Am J Gastroenterol. 2000 Feb;95(2):463-8. Links

The natural history of gluten sensitivity: report of two new celiac disease patients resulting from a long-term follow-up of nonatrophic, first-degree relatives.Niveloni S, Pedreira et al Dr. Carlos Bonorino Udaondo, and Universidad del Salvador, Buenos Aires, Argentina.

OBJECTIVE: Early studies revealed that up to 50% of non-atrophic, first-degree relatives of celiac disease patients exhibit features of gluten sensitivity. However, whether these features progress to a fully expressed celiac disease remain partially known. Our aim was to report two new patients resulting from a prospective, long-term surveillance of relatives who were nonatrophic at initial assessment. METHODS: After a median time of 86 months (range: 42-102 months) from the baseline assessment, we re-evaluated 44 first-degree relatives of propositi who had taken part in family studies and in whom baseline small intestinal biopsies were normal. At the baseline screening, 21 relatives had positive serum antigliadin antibodies and/or increased intraepithelial lymphocyte infiltration, and 23 did not. In addition, 11 of 18 had a celiac-like response to rectal gluten challenge and 16 of 34 possessed the characteristic HLA DQ2 haplotype (DQA1 0501 DQB1 0201). Re-evaluation was based on celiac-related serology antigliadin (AGA) and endomysial (EmA) antibodies. EmA-positive subjects underwent intestinal biopsy. RESULTS: At the end of the study, EmA was positive in only two subjects. Histological examination revealed flat small bowel mucosa in both. At baseline, both cases were EmA-negative and no minor histological changes were observed. One was a woman with positive baseline IgA and IgG AGA and a rectal gluten challenge with a celiac-like response; the other patient has presented only with a positive IgG AGA. In both cases, progression was detected in a clinically silent context. Both new patients had the characteristic HLA DQ2 haplotype. CONCLUSIONS: Our data suggest the need to re-evaluate relatives who have been negative on initial screening for celiac disease. Up to now, the progression to severe enteropathy was only observed in relatives who had presented some evidence of gluten sensitivity and the characteristic HLA DQ2 haplotype. Longer longitudinal studies are necessary to obtain definitive conclusions

[Tim-n-VA]

Biopsies are random pokes into your intestines. If they happen to miss the damaged areas, the test is negative.

The biospy is done on sites that look suspicious via the scope. While there are false negatives the "random pokes" seems to mischaracterize what is going on.

[Trillian]

I guess you have to decide for yourself if Enterolab is too expensive or would be worth the cost. To my mind, my health, confirmation of my reaction to the diet -- and shutting up a doubting husband -- were worth a few hundred dollars. I think most insurance companies don't pick this up, but I've heard that some are successful. It may make a difference whether your primary physician orders the test or not.

Hathor,

My husband doesn't doubt... and I feel so much better now. I'm going to forgo the Enterolab unless something else pops up and I need to find out if I have another intolerance. I'm crossing my fingers that I don't develop a soy/casien problem. I'm amazed that there are people on this forum who develop other intolerances AFTER they go gluten-free. That's not fair. Life's not fair I guess.

[Trillian]

I too am self diagnosed after having neg bloods and biopsy i.e. I respond when to the diet I've suffered joint pain, migraines, miscarriages, brain fog, depression for many years. All gone when gluten-free. I take multivitamins, iron, vitamin B complex, and magnesium (for the migraines) and call certainly tell when I'm not absorping after a glutening incident - if you know what I mean

Grommet,

I was shocked that my eczema and headaches went away so quickly after starting the diet. The secondary issues went away more quickly than the gastrointestinal problems. My skin cleared, headaches and joint pain got better, sinuses cleared up, etc. I was taking all kinds of meds for those and came off the meds quickly after starting the diet. Yeah!

[grommet]

Grommet,

I was shocked that my eczema and headaches went away so quickly after starting the diet. The secondary issues went away more quickly than the gastrointestinal problems. My skin cleared, headaches and joint pain got better, sinuses cleared up, etc. I was taking all kinds of meds for those and came off the meds quickly after starting the diet. Yeah!

I think it is always surprising to people that even some symptoms they did not suspect were to do with gluten - go away when gluten-free.

I'm glad the secondary issues are getting better.

I could cope with eating gluten if its was only the sickness and D. It's everything else i find difficult, seriously affecting my quality of life, and ability to work. That's what keeps me gluten-free!