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Katsby

Non Celiac Gluten Allergy?

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Ok let me be quick about my situation. A few months ago I was told to go on a Gluten Free diet for life. The thing is they don't really know what's wrong with me.

* I have had two celiac blood tests. One before gluten-free and one 9 months after gluten free (for a baseline in case I had to do a challenge). Both were in the same range of 12 with (0-19) as normal.

* I had an endoscopy that showed mucosal flattening of my entire duodenum, but the biopsies showed no villi damage. Even the Dr. wrote that celiac disease was suspected, but later found out that wasn't the case.

* I had a genetic test by my GI to look for DQ2 and DQ8. I was told I did not have celiac after the testing.

* I was told there was no possible way I could have Celiac Disease which is good.

SYMPTOMS:

* flushed, headaches, dizzy, dazed and kind of in a "coma", eczema on my hands, severe GI problems (chronic D, color change and fat in stool (I know gross), gas, bloating, very loud rumblings and noises, extreme pain on my left side where small intestines are (it feels like someone is flossing intestines with barbed wire), some swelling, etc. This all happens within a few minutes of ingesting gluten or wheat products.

My symptoms are why the Dr. found it so hard to believe that I didn't have celiac disease, plus I went through two GIs in the last year during all this testing.

I have been gluten free for one year and immediately within 2 days of stopping the diet my symptoms completely cleared up. My eczema hasn't been back, the headache, D and bloating, everything. Poof all gone. I even lost 40 lbs quickly that I had put on when all this started.

The thing is they don't know why. They can't tell me why I have mucosal flattening or why gluten affects me so badly. I have cried in my Drs office asking what exactly is wrong with me. I'd just like an answer. I've been given IBS drugs, but they never helped. I've also been given antibiotics to rule out bacterial overgrowths. I've had a colonoscopy to rule everything else out.

The Dr. told me I probably have an allergy to gluten like some people have to peanuts and that I should stay on the diet for life and that he doesn't think it's just in my head. He did tell me there were people out there doing research on those like me, but that didn't really make me feel better.

I feel so fed up like I'm wasting his time. I have thought about going to see an allergist, but I just feel so crazy. Does a non celiac gluten allergy even exist? I was sent to a dietician who kind of specializes in seeing celiac patients, but she couldn't offer me anything I hadn't already researched myself. I asked her if she had ever seen anyone like me before and she said only one other in 15 years, but that it didn't mean it didn't exist. That made me kind of feel a little crazier. I have been gluten free for a year now and thriving without symptoms as long as I don't eat any gluten (I am so sensitive I can barely eat anywhere but my house). My life has definately been impacted and everyone around me is very supportive, but I just want to know. I feel like nothing will change with the diet, but it's a piece of mind I think. Everywhere on the net I try to look up gluten allergy I just find celiac disease or gluten intolerance. I just feel like they know something real is wrong with me, but they just don't know what it is. I didn't really think it was just gluten intolerance since I figured he would have said that if it were.

Can anyone offer any insight?

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There are quite a few names for it - gluten intolerance, gluten sensitivity, gluten allergy, non celiac gluten sensitivity, etc. Many find they do better on a gluten free diet, regardless of Celiac diagnosis.

http://www.gluten.net/downloads/print/glut...leranceflat.pdf

You'll find lots of good information on this board. Welcome!

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I have a gluten, as well as dairy, intolerance also. Dairy gives me intestinal problems but the wheat and gluten makes me bipolar can you believe it? Gluten intolerance can be equally as problematic to the sufferer as celiac.

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This is a posting I made previously on the subject.

.

May be worth watching the slideshow.

.

https://www.celiac.com/gluten-free/index.ph...mp;#entry532281

.

Best Regards,

David


Chronically Ill and lost 56lbs in 3 Months Prior to Diagnosis.

Diagnosed in Nov 2005 after Biopsy and Blood Tests

Cannot tolerate Codex Wheat Starch.

Self Taught Baker.

Bake everything from scratch using naturally gluten-free ingredients.

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Very interesting and informative comments. But, also confusing to me. What is considered "positive" for antibodies?

I went to a new doctor for bio-identical hormone treatment, and she ran many other blood tests as well. What is confusing to me is that according to the reference on the test results, the range of 4 for both wheat and casein is considered in class 0/1, which is "very low". And yet she is telling me to eliminate these foods. I know there was some concern about leaky gut, because the candida albicans was just slightly out of range. Normal being <1, and The IGG was 1.1, the IGA was 1.7, and the IGM was in range at 0.5. And the food allergy profile shows no allergy to either wheat or milk, both were <.35, class 0 absent/undetectable. In fact, there were no food allergies detected at all.

Don't get me wrong, I am all for following good health practices, but I am questioning the diagnosis of gluten and casein sensitivity, as well as the leaky gut. Very possibly, the candida is related to antibiotic use. How do I know?

I have drastically reduced my consumption of these foods, but have been unable to completely eliminate them. I already knew I consumed too many carbs, so that has been reduced as well. I have had no negative symptoms that I am aware of, and did not present with any celiac type complaints. Of course, the list of gluten intolerance symptoms include everything from headaches and fatigue to much more serious complaints. Who doesn't get headaches? I am fairly certain that my headaches originate from a disc degeneration in the cervical spine, which was diagnosed after an auto accident. Plus they seem to come from my neck, I can feel it.

I am not trying to trivialize the significance of the negative affects that gluten intolerance can have on your health, I just don't want a doctor or anyone else taking an alarmist or extreme position when it's not warranted.

I am interested in your thoughts.

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Ok let me be quick about my situation. A few months ago I was told to go on a Gluten Free diet for life. The thing is they don't really know what's wrong with me.

* I have had two celiac blood tests. One before gluten-free and one 9 months after gluten free (for a baseline in case I had to do a challenge). Both were in the same range of 12 with (0-19) as normal.

* I had an endoscopy that showed mucosal flattening of my entire duodenum, but the biopsies showed no villi damage. Even the Dr. wrote that celiac disease was suspected, but later found out that wasn't the case.

* I had a genetic test by my GI to look for DQ2 and DQ8. I was told I did not have celiac after the testing.

* I was told there was no possible way I could have Celiac Disease which is good.

SYMPTOMS:

* flushed, headaches, dizzy, dazed and kind of in a "coma", eczema on my hands, severe GI problems (chronic D, color change and fat in stool (I know gross), gas, bloating, very loud rumblings and noises, extreme pain on my left side where small intestines are (it feels like someone is flossing intestines with barbed wire), some swelling, etc. This all happens within a few minutes of ingesting gluten or wheat products.

My symptoms are why the Dr. found it so hard to believe that I didn't have celiac disease, plus I went through two GIs in the last year during all this testing.

I have been gluten free for one year and immediately within 2 days of stopping the diet my symptoms completely cleared up. My eczema hasn't been back, the headache, D and bloating, everything. Poof all gone. I even lost 40 lbs quickly that I had put on when all this started.

The thing is they don't know why. They can't tell me why I have mucosal flattening or why gluten affects me so badly. I have cried in my Drs office asking what exactly is wrong with me. I'd just like an answer. I've been given IBS drugs, but they never helped. I've also been given antibiotics to rule out bacterial overgrowths. I've had a colonoscopy to rule everything else out.

The Dr. told me I probably have an allergy to gluten like some people have to peanuts and that I should stay on the diet for life and that he doesn't think it's just in my head. He did tell me there were people out there doing research on those like me, but that didn't really make me feel better.

I feel so fed up like I'm wasting his time. I have thought about going to see an allergist, but I just feel so crazy. Does a non celiac gluten allergy even exist? I was sent to a dietician who kind of specializes in seeing celiac patients, but she couldn't offer me anything I hadn't already researched myself. I asked her if she had ever seen anyone like me before and she said only one other in 15 years, but that it didn't mean it didn't exist. That made me kind of feel a little crazier. I have been gluten free for a year now and thriving without symptoms as long as I don't eat any gluten (I am so sensitive I can barely eat anywhere but my house). My life has definately been impacted and everyone around me is very supportive, but I just want to know. I feel like nothing will change with the diet, but it's a piece of mind I think. Everywhere on the net I try to look up gluten allergy I just find celiac disease or gluten intolerance. I just feel like they know something real is wrong with me, but they just don't know what it is. I didn't really think it was just gluten intolerance since I figured he would have said that if it were.

Can anyone offer any insight?

Hi, I am going to address the issues that I bolded in your query.

First off there are some of us who don't show up in blood work. If memory serves me it is about 30% according to the NIH.

Next you had celiac changes that your GI found, the mucosal changes, and you have 22 ft of small intestine. The damage from celiac can be patchy and your doctor may not have biopsied an area that was damaged.

As to the gene testing, in the US they only look for 2 recognized celiac associated genes but in other countries there are 7 more genes that are associated with celiac. I have a double dose of one of those 7 but gene testing would have me diagnosed with rhuematoid arthritis here. I am very thankful that I had gene testing done 5 years after diagnosis with celiac for that reason.

I know it is confusing but testing can tell you that you definately have it but can not say for sure that you don't.

You have showed positive on the most important test. Your bodies response to diet removed your symptoms. If the diet has helped you as much as it has your doctor was wise to tell you to keep to it. Sometimes our bodies give us the answer that testing cannot.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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