372.Gluten sensitivity without celiacs disease Moderated discussion and help for gluten free, coeliac, celiac, wheat allergies or intolerance, Cookery and recipes

Gluten sensitivity without celiacs disease: from on 2004-12-08

My husband has been a diabetic for 30 years, and had stomach cancer removed last year. He has only 25\% of his stomach left. He was dying due to poor food absorbtion, and really wacky insulin metabolism. No Dr. helped, we saw and article on celiac and gluten free diets and thought what have we got to lose. Within two weeks on gluten free food he gained 10 pounds, within a mont and a half his insulin was metabolizing at a normal rate. We wanted to have our son tested for gluten sensitivity. You'd have thought I was speaking greek to the doctors. Finally found one to test him, but before that test even came back he was found to have diabetes too. He is almost 13. His tests for gluten sensitivity came back in the high positive range , but the celiac test came back negative. The Doctor seemed to think I was stupid for wanting my son on a gluten free diet because quote" Why, he doesn't have celiacs disease?" So I'm supposed to keep him on gluten , so that he can develope it later. I also believe that he probably would not have developed diabetes if I had had him on a gluten free diet earlier. He had digestive problems as a small child and migraines and scalp exema. He threw up continually, to the degree that I had to home school him. We had him to a neurologist, and any number of other doctors, no one ever mentioned gluten. Why are doctors ignoring this? Why did no one mention this to my husband? Are there any other people out there who test positive for gluten sensitivity, but have not developed celiacs disease. By the way my husband is anemic and also has thyroid problems and is on synthroid. Has anyone had the thyroid start working properly after time on the gluten free diet? Does the anemia ever get better on the diet? My husband is being treated with procrit for the anemia, but we have had to fight for it!!! He doesn't fit normal criteria to get procrit. Is anyone out there facing these types of problems. Any advice is helpful, Doctores in our town don't know anything about it. Help

Re: Gluten sensitivity without celiacs disease: from on 2004-12-15


I found your post very very interesting. Here is my story:

Type II Diabetes runs in my family - my father has it.

In my twenties, I had my first metabolic symptoms in the form of lactose intolerance.

In my early thirties my doctor informed me that I was not diabetic yet, but likely would be, based on glucose testing, so I began to control my diet more carefully and test my blood sugar levels with a monitor.

In my mid thirties, I developed a reaction to bread, cereals, and other baked goods that appeared to be celiac sprue. I had the antibody tests (IgG? & IgA? something like that) and one came back positive, but the doctor said this was not a clear indicator of Celiac disease. So, I was booked to be violated in a scoping procedure. :D The procedure got moved up, and I was only able to begin the gluten challenge a day before the test, but the specialist said this would be just fine. It came back negative. So, I am not sure if this is conclusive either.

What was conclusive were my symptoms - two days of exhaustion, diarrhea and no digestion of my food commencing about two days after every challenge with gluten. (Piece of bread or bowl of pasta - so a significant amount)

Anyway, I went on an "almost gluten free diet" - no large portions, and mostly 100\% gluten free meals, but maybe once a week I'd have a small amount of gluten - in soy sauce for instance. This has been the case for about 5 years now. The symptoms only returned if I "cheated" repeatedly over a few days.

Three years ago, I began having gout episodes. Two years ago, kidney stones. This last year, two more kidney stones.

Last year I had my regular checkup and the doc diagnosed me with diabetes. So I began taking Allopurinol for gout and Metformin for diabetes in the spring.

Six months later (in the last couple of months) I noticed that something had changed. Cheating didn't have any discernable effect anymore. I have resumed eating gluten and have mild, if any, symptoms now.

I'm thinking that a bunch of different diseases, intolerances, allergies, and/or metabolic disfunctions probably have a similar root. The question for me is which is the foundation problem that needs to be solved to begin a path back to good health?

Also, I need to find someone who deals with this in a research or practical setting to ask questions. Should I have resumed consumption of gluten, or am I putting myself at more risk? I've been finding more material on the internet now that discusses a relationship between CD and diabetes, but nothing sounds conclusive and some doesn't even sound credible. (as expected)

DOES ANYONE out there know of a credible medical practitioner or researcher that is studying or treating the combination of diabetes and CD/GI with a perspective that they may have a root cause?

Thanks in advance for any recommendations you all might have!

Re Gluten sensitivity without celiacs disease: from s) Saadah OI ; Zacharin M ; O'Callaghan A ; Oliver MR on 2005-03-31

There are several points here.

If you stop eating gluten, and the intestine has time to heal, the symptoms won't show up on an endosopy. A few days eating gluten is certainly not long enough for the endosopy to be positive!

Your display of symptoms to the challenge are a sign of a strong response to gluten.

You would be advised to follow a completely gluten-free diet for the rest of your life. Don't restart the diet just because symptoms are now not so apparent. You are putting your health at risk.

There is an accepted medical risk that relates the coeliac condition to diabetes.
For example

2005 Jan; 164(1) 9-12
Additional Info Germany
Standard No ISSN 0340-6199; NLM Unique Journal Identifier 7603873
Language English
Abstract Coeliac disease has been shown to occur more frequently among first-degree relatives of diabetic patients than in the general population. Our objective was to assess the prevalence of endomysium antibodies (EMA) in non-diabetic siblings of Czech diabetic children and to evaluate the effects of HLA-DQ polymorphisms in determining the genetic susceptibility to coeliac disease (CD) in these subjects. We investigated 240 siblings of diabetic children from 213 families (125 males and 115 females, aged 12.6+/-4.9 years, mean +/- SD). All subjects were tested for the total IgA level to exclude IgA deficiency, and for endomysium IgA to disclose CD. In five IgA-deficient subjects, anti-gliadin IgG was used instead. Small bowel biopsy was offered to subjects with confirmed positive EMA. The HLA-DQA1, -DQB1 genotypes were determined using PCR-SSP. Positive EMA were found in 9/240 (3.8\%) subjects (three males, six females). The biopsy confirmed CD in six children, two had a normal mucosal finding and one refused the biopsy. The HLA-DQ2 polymorphism was more frequent among siblings with EMA (seven of nine) than in siblings without EMA (33\%), corrected P = 0.031. CONCLUSION The 3.8\% frequency of coeliac disease found in siblings of diabetic children is close to the 4.3\% found previously in Czech children with type 1 diabetes mellitus and is substantially higher than the rate in the healthy children population.
Record Type Index Medicus
Article Type Journal Article
Citation Status In-Process Owner NLM
Date of Entry 20041207
Accession No PMID 15480779
Database MEDLINE

2004 Sep; 89(9) 871-6
Additional Info England
Standard No ISSN 1468-2044; NLM Unique Journal Identifier 0372434
Language English
Abstract AIMS To study the effect of gluten-free diet on growth and diabetic control of children with type 1 diabetes mellitus and coeliac disease. METHODS Twenty one children (mean age 7.5 years, range 1.6-12.9) with type 1 diabetes, primarily initially identified on the basis of symptoms and consecutively diagnosed with coeliac disease by biopsy over a 10 year period, were matched by sex, age at onset, and duration of diabetes with two diabetic controls without coeliac disease. Weight, height, haemoglobin A1c, and insulin requirements were measured before and for 12 months after the diagnosis and treatment of coeliac disease. Dietary awareness and adherence were assessed by structured questionnaire. RESULTS A gluten-free diet resulted in a significant increase in weight-for-age z scores at 12 months after diagnosis (mean increase in z score 0.33) and in BMI (mean increase in z score 0.32). Increases in height did not achieve statistical significance. Controls showed no significant changes in weight, height, or BMI over the same period. Insulin dosage at diagnosis was less in coeliacs than in controls (mean difference 0.16 units/kg/day), but was similar to controls once a gluten-free diet had been established. Questionnaires were obtained in 20 patients. There appeared to be a relation between dietary awareness/adherence and growth parameters, but the small number of patients with "poor/fair" dietary adherence prevented meaningful analysis of this group. CONCLUSION Identification and dietary treatment of coeliac disease in children with diabetes improved growth and influenced diabetic control. Evaluation of the outcome of treatment of coeliac disease in diabetics should include assessments of gluten intake.


Re Gluten sensitivity without celiacs disease: from Cara on 2005-07-07

Hi there

I am just searching through the net and found ur post interesting

I have just had all the blood tests done for celiacs, but they come back negative, i believe that i would benifit from a gluten free diet due to many of the symptoms that i get

I am trying to search if there are any "bad"things from going on a gluten free diet?

i have found many articles on people finding benefits from going on the diet and no one saying anything bad except maybe a lack of fibre?

Anyone with any info i would love to hear from


Re Gluten sensitivity without celiacs disease: from Heila on 2005-11-12

I have had problems with sinus since childhood. Some kind of allergy that caused asthma and blocked my sinuses and drained into my ear. This has caused deafness in one ear, however have 85 \% hearing left in the other ear. But you can understand that I would like to keep my hearing and try and find the cause. I went for a lot of blood tests, but no cause to the allergy could be found, only grass, cat, dog, etc. I was diagnosed by a herbal doctor, using magnets that I am allergic to maize and wheat. Since then I have cut out maize and wheat product and only have problems again with my ears, if I cheat and have the odd pizza. Due to this I have no asthma, but if the doctors could have helped me sooner, I would not have lost my hearing in one ear. I have to agree that I don't get enough fibre and that causes problems with my colon, however I am trying products like soya yogurt, oats, linseed, lots of fresh vegetables like brocolli soups, to up my intake of fibre. I agree that the doctors should see this as a problem and help us with a diet or advice. Good luck!

Re Gluten sensitivity without celiacs disease: from Cliff Jenkins on 2006-06-17

I am satisfied that the Coeliac condition is endemic in our family. We know mother had it, my younger sister has it, my daughter has it, and a niece has it. Our version shows itself in the women and I assume that I carry the genes and may have a very mild version.

For the last twelve months my son and I have been on the GI diet with high (non-root) vegetables and fruit content and water. As a result we have virtually stopped eating white bread, now when we have white bread we both suffer difficult indigestion, we feel off. Regretably I think that also applies to Burgen bread which is superb! Pitta bread seems to be OK as did the bread I had on recent visits to France and Spain.

I am now testing to see how Linseed can be added to our diets to get them even better.

(With regard to doctors, I think they are frightened on the upheaval that coping with the changed diet in a family may have, particularly with the ones who have difficulty coping - you should have seen the relief on his face when I realised that my daughter's symptoms showed Coeliac and I said just that and he realised that I already knew the scenario. (For our part until then we had been worried whether she would be well enough for an operation on her jaw, we went straight on GF and within two weeks she was fit. YEH! )

Best wishes

Re: Gluten sensitivity without celiacs disease: from Nancy long on 2006-12-15

My 8.6y daughter has was diagnosed with type 1 diabetes 20 months ago. ( I'm not sure it is type 1 instead of type 2. The doctors did a test for Celiacs disease and it was negative; however, I try to tell her endocrinologist that its not that it is not the absorption of carbs & other foods that is the problem but how her body metabolizes the food after its absorbed( like a sponge absorbs a liquid; but what does that liquid do to the inside of the sponge). He did another test for Celiacs and I am sure it will be negative. Is it possible to have a total sugar intolerance OR do certain sugars react differently with the Immune system molecules, protein etc. I know i am asking a detatiled question but I can not stabilize my daughters blood sugar with I/C ratios because I can give her 45 carbs of one (set0 type of food and she will be fine with the I/C ratio and at other times with other foods she will bottom out with the same I/C ratio.


Re: Gluten sensitivity without celiacs disease: from Fara on 2007-02-08

Please tell me which test you did to verify gluten sensitivity. I was tested two years ago for celiacs and my blood test came back negative. The doctors never ran any other tests. I have been on a gluten free diet ever since and have responded positively. Do you know if the gluten sensitivity test would be accurate for an individual who has been gluten free for so long?

Re: Gluten sensitivity without celiacs disease: from Peter on 2007-02-08

I don't know of any gluten sensitivity tests which can give accurate and repeatable results for a person who is established on a gluten-free diet.

However the ultimate test is how you respond to a gluten-free diet. If this diet provides a good positive response, then you are best to stick to it whatever labels might be given to test results.

Re: Gluten sensitivity without celiacs disease: from Erin on 2007-03-29

The Gluten free diet will help may conditions. Though doctors will not tell you that diabetes can be cured. Or that MSG causes diabetes, and other issues. Enjoy the gluten free pizza without the peperoni (try canadian bacon). Diabetes can be conquered, and so can eating all the foods you love.

Macaroni and cheese

Rice noodles work best

.4 LBS cheese grated

2 marks of butter


the cheese sauce also works well for nachos

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