Non-celiac Gluten Sensitivity

[aurora]

Hello, forgive me if something similar has already been posted and if this is not in an appropriate section!

I was just wondering if there was anyone who knew some good links or anything for gluten sensitivity because all I seem to find is pages for Celiac's and I know this is also for people with celiac's but it is driving me a little mad. My experience with the doctor is as follows:

take a blood test

she calls me up and says oh you have a gluten sensitivity, don't eat gluten you don't have celiac's go look it up on the internet bye, and she hangs up

I also had a biopsy last year which did not show celiac's.

Is celiac's just a severe form of gluten sensivity or are they completely different - I am getting conflicting information.

Do you still have to be extra careful with contamination/crumbs/cosmetic products etc. if you just have a gluten sensitivity rather than celiac's?

Sorry if I sound completely ignorant but as you can see I had a VERY unhelpful doctor.

Thanks!

[cornbread]

Hi aurora,

Don't worry about the questions - it's a learning process for all of us. And the gluten intolerances vs celiac thing *is* confusing.

Did you have a gene test? If not I would highly suggest you get one. The reason being that if you DON'T have a celiac marker gene, you will always 'just' have gluten intolerance. However, if you DO have a celiac marker gene, this means it's very likely that if you don't stick to the gluten-free diet you will develop celiac in time. This is the position I am in. I have severe gluten intolerance and a celiac marker gene, so I'm treating it like celiac because if I go off the diet I will probably get intestinal damage,, aka diagnosable celiac disease. At this stage I'm healthy only because of the gluten-free diet, just like a celiac.

In terms of reasearching gluten intolerance, any info you find on celiac disease applies, except for the fact that in a non-celiac case your intestinal villi are not being damaged by gluten consumption. Non-celiac intolerance could lead to a host of other serious health problems though - MS, diabetes, etc. (if you eat gluten). So the two terms are pretty interchangeable - they are both life-threatening conditions which are kept under control by a strictly gluten free diet. Researchers are now starting to understand that celiac disease effects people in ways other than traditional intestinal damage, so the old standard method of diagnosing by biopsy is starting to look a little short-sighted and the boundaries between celiac disease and non-celiac gluten intolerance are blurring.

[aurora]

Thanks very much! I shall certainly look into that! I had no idea the gene test even existed!

[cornbread]

You can actually order them online. I (and many people on the board) got mine at www.enterolab.com. They send you a swab and instructions, you scrape you inner cheeks (mouth cheeks! ) and send it back. They email you the results in a few weeks. They test for HLA genes, of which you have 2. You might have a celiac gene, you might have a 'gluten intolerance' gene, one of each, two of one, etc. Of course having the gene doesn't mean you automatically have the disease, just that you have a gene that could get triggered in the future. It's good to know.

The direct link to the order form is here: Open Original Shared Link The gene test is $149.

[MySuicidalTurtle]

This message board will help you out a lot, Aurora. You'll need to keep on the diet the same as if you had Celiacs. All that's different is the reaction. Maybe you should get a better more helpful doctor, too.

[aurora]

Thanks everyone you are all so nice and helpful!

[kabowman]

I have not been formerly DX with celiac disease either but do have gluten intolerance. I had the same reacation from most of my docs...stay away from gluten for life, glad you figured this all out, move on. I did have a biopsy last year but was gluten-free for a while before and refused to go on gluten for test purposes. My oldest son, based on stomach problems and my history to his pediatrition, had the blood test but the numbers were negative.

My maternal grandmother had problems with gluten and I have a maternal aunt who DOES have celiac disease. My mother and sister have problems but refuse to try to figure out what may be causing them. I completely avoid gluten because I am very sensitive. I used to want the label but now, to me, it doesn't really matter...

[cguchek]

Hi Aurora,

I just came across your postings and think I fall in the same category. I found a site this morning that listed Health Risks Associated with Food Intolerance. All of the health risks I have (autoimmune conditions i.e., rosacea, Hashimoto's thyroiditis, lichen sclerosis, as well as back pain, fungal skin infections, overweight, and neurological conditions (hand tremor) are all listed as associated with gluten sensitivity. I was confused about the fact that I recently had a colonoscopy and it was normal. So the intestinal villi were not damaged. I am considering asking my doctor to order the gluten sensitivity test. Did you have that? When I asked him about eliminating the intake of wheat because of a fungal skin infection that keeps reoccurring, he didn't seem concerned. Did you have any antibody test? It's good to know there are people here for support. If anyone has any information on nonceliac gluten sensitivity, I'd be happy to hear from them. Thanks all.

[kelliac]

I was confused about the fact that I recently had a colonoscopy and it was normal. So the intestinal villi were not damaged.

<{POST_SNAPBACK}>

The colonoscopy only looks at the lower colon. The endoscopy through the mouth and down to the upper small intestine is where the biopsy for gluten sensitivity is taken. Did you have both procedures or just one of them? Did you have biopsies taken?

If you had the endoscopy with biopsies and it was negative, the doctor would probably say that you do not have celiac disease. However, as many different posts have mentioned, sometimes the villi in the upper small bowel just aren't damaged enough (yet) or perhaps the biopsy wasn't taken from a damaged part. The doctor should take several biopsies from different areas to check for damage. Results could also be affected by the amount of gluten eaten just prior to the tests. For example, if you were gluten-free for a month or so, some sources claim the intestine starts healing pretty quickly and may not show on biopsy. Don't know enough details about your testing so these are just thoughts. gluten-free diet is always worth a try.

[jerseyangel]

A colonoscopy will not tell you if there is damage to your villi--they are in the small intestine and you would need an endoscopy to obtain samples of tissue to be biopsied. The instrument is put down the throat, and through the stomach. The symptoms you listed could be associated with gluten sensitivity of some sort. The blood work would be a good idea. If you are going to be tested, do not stop eating gluten until after the tests, as that will skew the results. Good luck!

[Nevadan]

Hi Aurora,

I just came across your postings and think I fall in the same category. I found a site this morning that listed Health Risks Associated with Food Intolerance. All of the health risks I have (autoimmune conditions i.e., rosacea, Hashimoto's thyroiditis, lichen sclerosis, as well as back pain, fungal skin infections, overweight, and neurological conditions (hand tremor) are all listed as associated with gluten sensitivity. I was confused about the fact that I recently had a colonoscopy and it was normal. So the intestinal villi were not damaged. I am considering asking my doctor to order the gluten sensitivity test. Did you have that? When I asked him about eliminating the intake of wheat because of a fungal skin infection that keeps reoccurring, he didn't seem concerned. Did you have any antibody test? It's good to know there are people here for support. If anyone has any information on nonceliac gluten sensitivity, I'd be happy to hear from them. Thanks all.

<{POST_SNAPBACK}>

I have gluten sensitivity per Enterolab (I don't have either of the celiac disease genes, but I do have a pair of what they term GS genes (DQ1's).

I found your statement regarding fungal skin infections being health risks associated with food intollerance very interesting. I've been gluten-free for almost 5 months. I had had what looked like "athletes foot" between only two toes for years. I assume this qualifies as a fungal skin infection even though it did not respond to any of the athlete foot medicines. Anyway, after about 3 months being gluten-free, it has gone away. Could you please post where you found your info on fungal skin diseases as a symptom?

Another good source of info regarding GS can be found on the Braintalk forum at Open Original Shared Link Of particular interest is "The Gluten File" which shows up as the 1st or 2nd item on their index.

Thanks.

George

[darlindeb25]

Aurora-----To be truthful--the difference between gluten sensitive, gluten intolerance, and celiacs disease is just how much damage has been done. Sensitivity leads to intolerance, which leads to full blown celiacs in time. Everything you read about how to treat celiacs is exactly the way you should be taking care of yourself now. It's kind of like getting a sunburn--you can have a little burn, moderate burn, or a bad burn--but you should have stayed out of the sun once the little burn was noticed. If you have to be one of us, then it's good you find out now, before they tell you it's celiacs. I wish I had known before it was this bad, maybe then I wouldnt have neuropathy too and maybe I would not have developed all these other intolerances too. I dont know, I dont think enough is known yet about celiacs. Deb

[Nevadan]

Another good source of info regarding gluten sensitivity is the book "Dangerous Grains" by Braly & Hoggan (~$10 @ Amazon). Sorry I forgot to mention this in my previous post on this thread.

George

[VegasCeliacBuckeye]

I have not read nor seen any scientific data that states "gluten sensitivity eventually develops into Celiac Disease"...

It was my understanding that one is genetiacally linked while the other is not...

Am I wrong? I thought they were separate conditions...

[Nevadan]

I have not read nor seen any scientific data that states "gluten sensitivity eventually develops into Celiac Disease"...

It was my understanding that one is genetiacally linked while the other is not...

Am I wrong? I thought they were separate conditions...

<{POST_SNAPBACK}>

As everyone says, it is very confusing. It doesn't help that different dr's, authors, etc use the terms differently. It seems like the thinking is converging toward the concept that "celiac disease is just the tip of the gluten sensitivity(GS) iceberg" with celiac disease being just one presentation of GS.

Dr. Hadjivassiliou says, in "Gluten sensitivity as a neurological illness"

"IgG anti-gliadin antibodies have been the best diagnostic marker in the neurological population we have studied. IgG anti-gliadin antibodies have a very high sensitivity for celiac disease but they are said to lack specificity. In the context of a range of mucosal abnormalities and the concept of potential celiac disease, they may be the only available immunological marker for the whole range of gluten sensitivity of which celiac disease is only a part. Further support for our contention comes from our HLA studies. Within the group of patients with neurological disease and gluten sensitivity (defined by the presence of anti-gliadin antibodies) we have found a similar HLA association to that seen in patients with celiac disease: 70% of patients have the HLA DQ2 (30% in the general population), 9% have the HLA DQ8, and the remainder have HLA DQ1. The finding of an additional HLA marker (DQ1) seen in the remaining 20% of our patients may represent an important difference between the genetic susceptibility of patients with neurological presentation to those with gastrointestinal presentation within the range of gluten sensitivity."

Open Original Shared Link

There have been several papers reporting various neurological presentations for people without the celiac disease genes (DQ2,8); these people often have the DQ1 gene versions. There is even evidence that having "just GS" can affect ones metabolism making it difficult to absorb vitamins and minerals even without the damaged villi of celiac disease. There is evidence that for the whole GS population, consuming gluten can contribute to a "leaky gut' which is not good. The bad news regarding consuming gluten for those of us that are GS (celiac disease, or not) is that it makes us all more vulnerable to developing immune and/or autoimmune diseases.

Given that only about 1-2% of the people with celiac disease (damaged villi) have the DQ1 gene in lieu of DQ2or8, it seems unlikely that continuing to eat gluten with the DQ1 leads very often to celiac disease. If it did, the percentage of celiac disease's with DQ1 should be higher. According to Enterolab info: 30% of general population has DQ2, 12% of gen pop has DQ8, 38% of gen pop has DQ1. It's probably worth noting that only about 1% of the gen pop has celiac disease, a minor portion of those with DQ1,2,8 so there may likely be other genes not yet identified that will be even better indicators of GS/celiac disease.

I'm a dual DQ1, with no malabsorption per Enterlab but still have osteoporosis and mild anemia which may be indicative of GS induced metabolism problems - time will tell. I do have mild peripheral neuropathy and restless leg syndrone which are neurological problems frequently associated with the "just GS" people.

Hope this helps.

George