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jo_marnes

Test Results Positive.... But....

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Hi everyone,

Yesterday my Dr told me I have celiac disease. I was tested for food allergies as on 3 occasions over the past year I have had some awful stomach pains.... I wasn't expecting results to show anything. I feel that my issues are more related to fatty foods more than wheat.... anyway...

My results for Tissue Transglutaminase IgA and IgG were high. I can't remember which way round they were (Mum's a nurse and taken results to work to ask someone), but one was 69 and in the 'high positive' reference range and the other was >800, where 'normal' was considered to be <20! In fact, their reference range only went up to >80! So, these clearly are high results and indicate celiac according to my printout. However, wouldn't someone with such high results have real bad symptoms? I dont. I have eaten gluten all my life (I'm now 26) and never had issues before. I don't have loose stools, no vomiting, no malnutrition, no trouble keeping weight on etc. The only issues are that I've had these episodes of pain (last about 4 days) which I can't really pin point on anything.

My sister has been diagnosed with IBS and now I'm concerned that I'm doing myself damage without knowing. And what about my kids - should they be tested? My Doctor just told me to go gluten free.... not even mentioned a biopsy or anything. What should I be thinking?

Thanks!

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You're definitely celiac. Some celiacs are 'silent celiacs' with no outward symptoms, so you're lucky you had enough that you got tested. You may find you have a host of symptoms you don't associate with celiac that will resolve going gluten free. Symptoms can present in a lot of ways (migraines, ataxia, lack of concentration, hypoglycemia, anemia, depression, etc.)

The problem with fatty foods is that your intestines can't absorb them anymore (fat malabsorption.) After your intestines start to heal, this should go away.

You don't have to have a biopsy. It can be useful to see the extent of the damage of your intestines and as a comparison later, if you feel you're not getting better gluten free.

Make sure your sister is tested for celiac. It's genetic, and a LOT of people on this forum were initially misdiagnosed as having IBS. You may want to have your children screened for it.

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Welcome to the board. Yea you are pretty firmly diagnosed with those results. Do encourage everyone in your family to be tested. Celiac can have different presentations for different people. My DD had stomach pain, severe, as her main symptom and also fatigue. My DS was growth stunted, had stomach pain and mood issues. How it hit me is in my signature. While it is a diagnosis that can take some getting used to it is good that you have been diagnosed before the autoimmune process hit with enough force to severely impact other organs like your thyroid, gallbladder or brain. Your in a good place to learn what you need to do to keep yourself safe and get a bit of support while you do so. Ask whatever questions you need to.


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 replies....

I guess what I'm really wondering, is that given my lack of symptoms, does it matter? Do I have to be gluten free?? If it only makes me symptomatic a handful of times, is it worth the whole gluten free headache??! And to what extent do you have to be gluten free? Only a handful of products in my pantry are gluten free.... can you eat gluten in small amounts? I.e. if the packet says 'May contain gluten'

I've been back to the GP who has now referred me for a biopsy (think I need pursuading that this is a reality) and I will ask the specialist about screening the kids. I'm thinking there is a good chance my youngest has it (he's almost 3) as he is very skinny and small for his age.... not gained much weight in the last year or so. He often has loose stools, although doesn't complain of pain or anything much.

My Sister is getting her bloodwork done today so will learn next week....

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I'm sorry but you really need to be strict with the diet. There are some who have no symptoms at all but they still need to be strict with the diet. You do have episodes of stomach pain, that is a symptom. There may also be other things that you don't realize are associated with celiac going on. You run the risk of developing other autoimmune disorders and even cancers if you continue to consume gluten. You don't want to look back in ten years after having your thyroid destroyed or developing mental illness or cancer, going through an early menapause or finding you have osteoporosis etc and think if only I had paid attention to the celiac diagnosis.....

The diet is hard at first but it is doable and we are here to help in any way we can.


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 replies....

I guess what I'm really wondering, is that given my lack of symptoms, does it matter? Do I have to be gluten free?? If it only makes me symptomatic a handful of times, is it worth the whole gluten free headache??! And to what extent do you have to be gluten free? Only a handful of products in my pantry are gluten free.... can you eat gluten in small amounts? I.e. if the packet says 'May contain gluten'

The big concern with celiac is bone density. It's not yet clear whether people with silent celiac disease absorb enough calcium and vitamin D for bone health. You are not a "silent" celiac either if you have days-long episodes of pain. Your inability to handle fatty foods is from celiac malabsorption. There is also an idea of latency with celiac disease. People with elevated TTG and negative biopsy have been followed in studies and many convert to full-blown classic celiac with a positive biopsy within five years. If your gut is healthy now by biopsy (which would surprise me), you can preserve your health by going onto the gluten-free diet.

There are other risks with TTG autoantibodies. The autoantibodies can cause neurological damage, arthritis, and celiac autoimmunty seems to trigger other autoimmune diseases like Hashimoto's thyroiditis or Sjogren's. Doctors are not very aware of these problems but we see them around here all the time. Basically, your immune system is currently primed for self-attack. If you go off gluten, the TTG antibodies should go away and you "shut down" the autoimmunity.

Your diet should be as gluten-free as you can possibly make it. Then when the inevitable traces creep in that you are not aware of, your body is healed enough that there is not damage from the unavoidable exposure. "May contain gluten" is not a good idea.

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