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jillb

Skin Rash-is It Celiac? Unable To Diagnosse

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I started noticing stomach issues in the last 2 years. I am a 35 year old female. I have always been lactose intolerant. My cousin has a diagnosis of Celiacs. About 10 months ago I started having alot of bloating and gastritis type pain, constipation. I went to an internist and tested negative on the blood test for the gluten antibodies. I do not eat alot of gluten though and feel the test could not be accurate. Now I am starting to see random red dots on my chest or arms the day after something with gluten, then it goes away in 24-48 hours. Then I went to a GI Doctor and had an endoscope and colon biopsy-negative. Again, I still did not eat alot of gluten prior to the test. I am now on levbid and prevacid for an acid stomach. Symptoms are better for the constipation. My Dr. says I probably just have an intolerance to gluten. Now I am getting the rash in clusters on my neck and shoulders after I eat gluten which I know is a sign. It use to go away after 2 days, but now the eczema looking rash hangs around and inflammes after eating eating, but doesn't go away after weeks. Can the rash be tested for antibodies? The rash does not have water blisters, but could it be Celiacs? Any suggestions of others tests?

Jill


2006 Interstitial Cystitis

2007 Gastritis, errosive esphogitis diagnosis,

negative blood work and biopsy

2007 Gluten Intolerant (Celiac self-diagnosis)

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I started noticing stomach issues in the last 2 years. I am a 35 year old female. I have always been lactose intolerant. My cousin has a diagnosis of Celiacs. About 10 months ago I started having alot of bloating and gastritis type pain, constipation. I went to an internist and tested negative on the blood test for the gluten antibodies. I do not eat alot of gluten though and feel the test could not be accurate. Now I am starting to see random red dots on my chest or arms the day after something with gluten, then it goes away in 24-48 hours. Then I went to a GI Doctor and had an endoscope and colon biopsy-negative. Again, I still did not eat alot of gluten prior to the test. I am now on levbid and prevacid for an acid stomach. Symptoms are better for the constipation. My Dr. says I probably just have an intolerance to gluten. Now I am getting the rash in clusters on my neck and shoulders after I eat gluten which I know is a sign. It use to go away after 2 days, but now the eczema looking rash hangs around and inflammes after eating eating, but doesn't go away after weeks. Can the rash be tested for antibodies? The rash does not have water blisters, but could it be Celiacs? Any suggestions of others tests?

Jill

You could see a dermatologist for confirmation of DH, he would biopsy the area near the outbreak to look for the antibodies in the skin. There are other skin problems that are also seen with celiac disease other than just DH though. If your doctor has told you that you are gluten intolerant then you need to avoid gluten just as strictly as someone who has been diagnosed with full blown celiac. You could see about getting a GI refferal for an endoscopy for a definate diagnosis, you would need to continue eating gluten until the testing is done, or you could stop eating gluten, see if everything resolves and if you still have doubt do a short gluten challenge to see if you react. Dietary response and challenge are also considered good diagnostic tools by some doctors


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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Thanks for the info. I did have the endoscope which tested negative, but I did not eat much gluten prior to the test. Why is it so important to avoid the gluten even if I am just "intolerant" versus Celias? I know it can be cancerous if you have Celias, but I did not think intolerance was the same thing. My Dr. said I could eat a bunch of gluten and then blood test again, but it would defeat the purpose and put me back into my bad stomach situation. Can the GI Dr. do the skin biopsy?


2006 Interstitial Cystitis

2007 Gastritis, errosive esphogitis diagnosis,

negative blood work and biopsy

2007 Gluten Intolerant (Celiac self-diagnosis)

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Thanks for the info. I did have the endoscope which tested negative, but I did not eat much gluten prior to the test. Why is it so important to avoid the gluten even if I am just "intolerant" versus Celias? I know it can be cancerous if you have Celias, but I did not think intolerance was the same thing. My Dr. said I could eat a bunch of gluten and then blood test again, but it would defeat the purpose and put me back into my bad stomach situation. Can the GI Dr. do the skin biopsy?

A derma needs to do the biopsy, many US GI don't even know about the skin or neuro effects of gluten. Your doctor is totally wrong about intolerance not leading to other problems. There are some who realize that intolerance can be present for years before celaic is found on GI biopsy. The biopsies are very hit and miss and although they can definately diagnosis celiac they can not definately rule it out. Intolerance can lead to nerve issues, brain problems, joint and muscle problems, lymphomas and GI cancers and all the other stuff that 'villi confirmed' celiac can. The celiac gene I carry is not recognized in the US as a celiac gene, here I am considered gluten intolerant. I should note that in Japan my gene is clearly a celiac gene but doctors here don't see it very often. My DD had her genes tested at a major US hospital and told she doesn't carry the celaic gene just the intolerance one. It is a total misconception that intolerance is a 'you can do the diet or not' finding. You really do need to be totally gluten free to resolve your symptoms and avoid the autoimmune problems that will appear if you don't. Also be sure to check your meds, with your doctor being as celiac misinformed as he is it is likely that you are on meds that are not safe.


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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A derma needs to do the biopsy, many US GI don't even know about the skin or neuro effects of gluten. Your doctor is totally wrong about intolerance not leading to other problems. There are some who realize that intolerance can be present for years before celaic is found on GI biopsy. The biopsies are very hit and miss and although they can definately diagnosis celiac they can not definately rule it out. Intolerance can lead to nerve issues, brain problems, joint and muscle problems, lymphomas and GI cancers and all the other stuff that 'villi confirmed' celiac can. The celiac gene I carry is not recognized in the US as a celiac gene, here I am considered gluten intolerant. I should note that in Japan my gene is clearly a celiac gene but doctors here don't see it very often. My DD had her genes tested at a major US hospital and told she doesn't carry the celaic gene just the intolerance one. It is a total misconception that intolerance is a 'you can do the diet or not' finding. You really do need to be totally gluten free to resolve your symptoms and avoid the autoimmune problems that will appear if you don't. Also be sure to check your meds, with your doctor being as celiac misinformed as he is it is likely that you are on meds that are not safe.

I am on prevacid and levbid for ibs. How can these hurt if I have celiacs? They basically are acid reducers. Also, would you still recommend genetic testing? I didn't realize they could tell by your gene if it is intolerance or celiacs. I have already noticed joint pain, bladder pain, menstral prolems....


2006 Interstitial Cystitis

2007 Gastritis, errosive esphogitis diagnosis,

negative blood work and biopsy

2007 Gluten Intolerant (Celiac self-diagnosis)

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