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Guest ShannonL

Help Please. I Am Sooo Confused!

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Guest ShannonL

Ok here goes. I was dx as Celiac 10/01. Immediatly went on the diet and did well. No more cramping/diarrhea, etc. My IGG was 88. My IGA was 21. My pathology report doesnt say too much. My doctors said I have Celiac. THEN 05/03 my tests came back normal (on gluten-free diet). Then I switched dr's and she looked at my files and said that I dont have celiacs I have a wheat allergy. Therefore....my stubborn self eats gluten all the time. My 8mo dd has severe milk/soy and now suspected wheat allergy so when I spoke to her GI about her case I meantioned my wheat allergy and he was concerned for my health. Now he wants to see my chart. He is a sweet man! Anyway. Is it possible to have celiac and biopsy not be too bad...says villa is uniform and intact. I have a terrible habit of eating wheat and taking imodium since it is only an allergic reaction (I KNOW I AM CRAZY!) Thanks...I am so frustrated and worried that I have really hurt myself.

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If you tested positive for Celiac, then YOU HAVE CELIAC! Your second test, while gluten free, would come back negative because if you don't have gluten in your system, the antibodies won't show up. YOu have to be eating gluten regularly for a test to show up positive. It is absolutely possible to have your biopsy show no damage and still have Celiac.


~Angie~

Gluten free since May 2004

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When you are on a gluten-free diet, results from celiac disease tests are likely to be false negative. Meaning the gluten-free diet is working! I persoannly would go with the opion of the doctor that orginally treated you and tested you. I would also ask for allergy tests such as a skin prick test or an allergy blood test.


Carrie Faith

Diagnosed with Celiac Disease in March 2004

Postitive tTg Blood Test, December 2003

Positive Biopsy, March 3, 2004

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Shannon, you really need to be 100% gluten-free, or you're going to make yourself very ill in the long run. The doctor who told you that it's only a wheat allergy didn't know what she was talking about. Your bloodwork clearly shows it's celiac disease, and your original diagnosis was correct.

Since celiac disease is genetic, your little one probably has celiac disease as well, and needs to be gluten-free, too.

Trust me, I am suffering from a lot of problems because of undiagnosed celiac disease for 52 years. Most undiagnosed people with celiac disease die way ahead of their time, most often of intestinal cancers. For your families and your sake, don't let it come to that! You HAVE a diagnosis, stop fooling yourself and face the facts, and be gluten-free immediately! Your baby needs you not just now, but for another 20 years (and really, well beyond that).


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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Guest ShannonL

Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

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Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

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Well I would say if you go and "stay" gluten-free you have the best chance to have any of your symptoms get better or disappear. I had a blood test for the first time 14 months after my biopsy last year and was not surprised that all my levels were negative/normal. This told me exactly what I expected and that is that I have been avoiding gluten successfully. Do I think I still have Celiac Disease? Of course I do. The body can only be as healthy as you allow it to be. How about the rest of your family? Are they going to support you in this second attempt going gluten free? The only thing that will guarantee complete success on this diet is your committment to compliance 100%. Education on your part is manditory but support by others is optional. Will support make it easier? Yes it will. Can you count of support from this forum? Yes again. Get started today and make it happen. Good luck.

Tom

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Thank you all! You are right.I am going to be gluten-free from now on....I just hope I can get a handle on it quickly. It has been soooo long since I have eaten w/o gluten. Also....as far as the numbness and tingling in my hands.. will that improve?

Shannon

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The numbness and tingling in your hands suggests neuropathy, which is a common symptom of celiac disease. And yes, chances are that those symptoms will completely go away after a while of being gluten-free. You can do it! You just need to set your mind to it. And coming here and asking your questions was an excellent first step (and shows that really, you knew you have celiac disease and just needed confirmation).

I used to get numbness and tingling in both my hands and feet, and don't have that problem any more.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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You can try taking some B12 for the tingling and numbness. Celiacs are typically nutritionally deprived. Use the sublingual or injections though since they will work quicker.

Welcome to the board :) Marcia


Jan 1990 - Dx CFS/ME/FM (URI's, Ataxia, myoclonus, orthostatic hypotension, insomnia, brain fog, swollen lymph nodes, sore throat... ) Completely Disabled (housebound and bedridden at times)

2004 - Digestive pain all the time.

May 2004 - Hiatal hernia, erosive gastritis, gastroparesis (endoscopy)

August 2004 - Colon polyps, diverticulitus, internal hemorrhoids (colonoscopy)

No relief from Nexium, Prilosec, Protonix, Zelnorm, Miralax, Imodium, Lomotil ...

July 2005 - GP recommended WFDFSFEFCF + vegan (Also, anything that hurts free)

Immediately stopped needing naps and digestive pain reduced.

Sept 2005 - GFDFCFSFEF + chemical free - Immediately stopped feeling jittery / buzzing and digestive issues were much better.

June 2006 - Dx B12 and iron deficient. Started B12 injections and using cast iron pan.

August 2006 - MYOCLONUS GONE. (off Klonopin)

September 2006 - ATAXIA, INSOMNIA and Feeling like the floor was moving under my feet gone.

June 19, 2007 - Positive DQ2, Dx Celiac

October 2007 - Sleeping like a baby, waking up with energy, but still having fatigue/stamina issues

Nov 2007 - Started Paleo diet for chronic hypoglycemia

April 2008 - GTT normal. I'm no longer hypoglycemic. Started Low oxalate diet for kidney stones.

May 1, 2008 - Began salt loading for OI/NMH - noticed immediately muscle weakness was gone. I was sodium deficient but my labs don't reflect it. Still working on OI and PEM.

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Ok here goes. I was dx as Celiac 10/01. Immediatly went on the diet and did well. No more cramping/diarrhea, etc. My IGG was 88. My IGA was 21. My pathology report doesnt say too much. My doctors said I have Celiac. THEN 05/03 my tests came back normal (on gluten-free diet). Then I switched dr's and she looked at my files and said that I dont have celiacs I have a wheat allergy. Therefore....my stubborn self eats gluten all the time. My 8mo dd has severe milk/soy and now suspected wheat allergy so when I spoke to her GI about her case I meantioned my wheat allergy and he was concerned for my health. Now he wants to see my chart. He is a sweet man! Anyway. Is it possible to have celiac and biopsy not be too bad...says villa is uniform and intact. I have a terrible habit of eating wheat and taking imodium since it is only an allergic reaction (I KNOW I AM CRAZY!) Thanks...I am so frustrated and worried that I have really hurt myself.

At the Stanford Celaic Conference yesterday I spoke with Dr. Peter (I think) Green. He is one of the MAJOR experts on Celiac. He told me that a Celiac who has been on a Gluten Free diet for a while may very well test negative for Celiac.

Also, when I went through the gammut of allergy tests a few months ago, I was very perplexed to find out I tested "negative" for wheat. When I aksed what that was about, my allergist told me that when they test for wheat allegergies, it does not test for celiac - they are two separate things!!!! A proper wheat allergy WILL KILL YOU - or at least send you into anaphalactic(sp) shock. So unless your throat closes up on you when you eat wheat, and you require an epi-pen for it, then it is NOT a proper wheat allergy.

According to my biopsy, I do not have celiac, bu then, I have been on a gluten-free diet for over six months. As Dr. Green said, a celiac who was on a gluten-free diet might very well have normal biopsy results.

One thing I learned from yesterday's conference is to seek out a Dr. who specializes in celiac disease.

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Guest Robbin
You can try taking some B12 for the tingling and numbness. Celiacs are typically nutritionally deprived. Use the sublingual or injections though since they will work quicker.

Welcome to the board :) Marcia

I am interested in this since I still have the numbness and tingling and it isn't getting better. What kind of b12 do you use? Is it otc?

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Shannon,

Go with the first doctor. As the others have said, if you've been gluten free your tests will come back normal.

I have a thread I started with gluten, dairy and mostly soy free stuff in the recipes section. I am soy intolerant and don't eat it but posted for others.

Please get your daughter gluten free if you're not going to do any testing on her. If you are doing testing she will need to remain on gluten until it's done.

Robbin,

My b12 I got from the doctor. It's prescription because it's injected. I haven't used it since my regular doctor said my levels were normal. I don't know the numbers though. The one injection must have fixed me up along with going back to a meat eating diet.


Andrea

Enterolab positive results only June 06:
Me HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0301; Serologic equivalent: HLA-DQ 2,3 (subtype 2, 7)
Husband HLA-DQB1 Molecular analysis, Allele 1 0201; HLA-DQB1 Molecular analysis, Allele 2 0302; Serologic equivalent: HLA-DQ 2,3 (subtype 2,8)



The whole family has been soy free since February, gluten free since June 2006.

The whole family went back to a gluten diet October 2011.  We never had official testing done and I decided to give gluten a go again.  At this point I've decided to work on making some gluten free things again, though healthwise everyone seems to be fine.  The decision to add gluten back in was also made based on other things I'd read about the 2nd sequence of genes.  It is my belief that we had a gluten intolerance, but thanks to things I've learned here, I know more what to keep an eye on.  If you have a confirmed case of celiac, please don't go back to gluten, it's a lifelong lifestyle change.

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