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After suffering a lifetime of symptoms I finally went gluten free 6 months ago.

I had canker sores from a very young age. Rashes on my ankles that would never resolve. Finally after a bad spinal injury I started to have peripheral neuropathy on my right side. Pain and tingling in my foot going up the side of my body all the way to my wrist. And of course the classic diarrhea.

So in January this year I decided to go in a full Elimination Diet for a month. The diarrhea went away but the other symptoms were still there. After a month I challenge myself with a flour tortilla and lost my cookies so to speak for 3 days. So I'm positive I'm sensitive to gluten. And Celiac runs in my family.

So after a nearly six-month run my lifetime of migraines is almost gone. Peripheral neuropathy is still there but fading everyday now. I had a tax yes so bad I can barely walk a year ago. All the other signs and symptoms as well like anxiety depression brain fog pressure behind the eyes all subsiding. I had a horrible swelling around my eyes for years that is almost completely gone. People who haven't seen me in a while are surprised they think I've lost a ton of weight I have lost some weight but mostly it's the swelling.

So here's the rub. After discussing all of this with my PCP he just kind of shrugged his shoulders like meh. There is no question now that I am maintaining a gluten free and mostly Dairy and soy free diet from this point forward.

So the big question now is do I go on and get tested for the alleles? Because I am not planning on doing the gluten challenge I just don't even want to think about ingesting any gluten at this point. I can see that within the next three to six months my lifetime of health issues due to this will probably be completely or at least 95% resolved.

If anybody else has had a similar experience it would be nice to have some input. Since I haven't gotten much direction from my primary care provider I've got to find a naturopath or somebody who deals with gluten sensitivity.

 

 

 

 

 

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It's your call here, as it sounds like you would not touch gluten again with a 10 foot pole, not matter what the genetic test results show. You may want to do it to help encourage your other family members to get tested, should your results be positive.

When I had my genetic tests done it turned out that I am positive for both DQ2 and DQ8, and I got one from each parent, thus, I could have celiac on both sides of my family. My father died young from heart issues caused by Type 1 diabetes and smoking, but it was interesting to learn that he may have had celiac disease, or gluten sensitivity as well (perhaps this led to his diabetes at 26 years old?).


Scott Adams

Celiac.com - Celiac Disease Board Moderator

Founder Celiac.com

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First of all, I would get another PCP who will take you seriously and is willing to learn about Celiac Disease. If your PCP is up in years it might be wise to shop for a younger one who has more current training and exposure to the celiac phenomenon. Or get a referral to a GI doc.

If you have been eating gluten free for a while now, blood testing or an endoscopy/biopsy will be of no use. Genetic testing may indicate vulnerability with regard to celiac disease but does not guarantee that you have it or will have it. Some who have all the bad genes for Celiac never get the disease.

All of your symptoms scream Celiac Disease. The rash you spoke of could be dermatitis herpetiformis, the most classic symptom of celiac disease.

Get a new doc and keep eating gluten free. The neurological symptoms many never completely disappear however, as some irreparable damage may have already occurred and be the result of your accident rather than celiac disease.

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Have they tested your B12 levels? If not it would be a good idea to make sure they are above 250. As for the ataxia I had it so severe that I couldn't walk unaided. The diet helped but the assistance of a physical therapist was invaluable. It took some work but I can walk fairly normally now although some balance issues do still remain. However I went undiagnosed for over 40 years so my damage was severe.

Personally I would not bother with the gene testing. If you feel you have to have a formal diagnosis do a challenge and get blood and biopsy. There are more than just the two genes associated with celiac but many doctors are not aware of that.  I am a double DQ9 and one of my blood and biopsy positive children did gene testing and was told that her diagnosis was false and went back on gluten.

 


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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3 hours ago, Annisj said:

After suffering a lifetime of symptoms I finally went gluten free 6 months ago.

I had canker sores from a very young age. Rashes on my ankles that would never resolve. Finally after a bad spinal injury I started to have peripheral neuropathy on my right side. Pain and tingling in my foot going up the side of my body all the way to my wrist. And of course the classic diarrhea.

So in January this year I decided to go in a full Elimination Diet for a month. The diarrhea went away but the other symptoms were still there. After a month I challenge myself with a flour tortilla and lost my cookies so to speak for 3 days. So I'm positive I'm sensitive to gluten. And Celiac runs in my family.

So after a nearly six-month run my lifetime of migraines is almost gone. Peripheral neuropathy is still there but fading everyday now. I had a tax yes so bad I can barely walk a year ago. All the other signs and symptoms as well like anxiety depression brain fog pressure behind the eyes all subsiding. I had a horrible swelling around my eyes for years that is almost completely gone. People who haven't seen me in a while are surprised they think I've lost a ton of weight I have lost some weight but mostly it's the swelling.

So here's the rub. After discussing all of this with my PCP he just kind of shrugged his shoulders like meh. There is no question now that I am maintaining a gluten free and mostly Dairy and soy free diet from this point forward.

So the big question now is do I go on and get tested for the alleles? Because I am not planning on doing the gluten challenge I just don't even want to think about ingesting any gluten at this point. I can see that within the next three to six months my lifetime of health issues due to this will probably be completely or at least 95% resolved.

If anybody else has had a similar experience it would be nice to have some input. Since I haven't gotten much direction from my primary care provider I've got to find a naturopath or somebody who deals with gluten sensitivity.

 

 

 

 

 

There is a blood test for the familiar type of celiac disease. Since it does run in your family. Gi dr can do the blood test.

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