Retested After 29 Years- ? About Tests- Please Help

[kbkbab]

Hello everyone,

Here is a little history about myself and my Celiac Lifestyle. I am 31 diagnosed back in the 70's so have had it for 29 years. According to my mother, a biopsy was done, they said I had, no questions asked.

I have "cheated" more so within the last 10-15 years of this, and have NO symptoms of any kind. I haven't packed down a Pizza, but have eaten Cake and other items I know contained wheat, rye, barley oats or flour in them. Nothing has ever happened as a result of eating these items.

Nobody in my family has it, and no history of Mother/Father side who can recall ever having anything wrong with them.

I had blood work done, retested and the Dr told me today my TTG was Normal. I had a DQ2 Positive and a DQ8 negative. She said I should still have an Endoscopy, which I have to wait for as I am 5 weeks away from having my third child. Husband is supportive as others around me. What do any of these things mean to anyone?

The weeks wait for the blood work was torture, now ot wait another month and a half to have the Endoscopy will be brutal. I don't know at all what the Positive and negative results mean...

Anyone?? Help please???

Thank you

kbkbab

[Nancym]

Well, I think once you get healed it can take years of full time gluten eating to get back to the serious damage they can detect with an endoscopy or blood tests. Meanwhile, what if you are and eating wheat causes enough damage that you're not getting as much nutrition as you need, especially while pregnant?

A gluten free diet never hurt anyone... if it were me, I'd err on the side of paranoia especially while I was having children, or planning to.

[Viola 1]

Yes ... if you have been mostly Gluten Free the tests would likely be negative. You could try genetic testing and see if you carry the genes.

[Electra]

Yes ... if you have been mostly Gluten Free the tests would likely be negative. You could try genetic testing and see if you carry the genes.

Hey if the gene tests comes back negative then you know you don't have it right? You can not get Celiac if you do not have the gene can you?

[kbkbab]

Thank you for the feedback. Here are the results of some of the tests she did for me:

TTG Normal

DQ2 was positive

and the DQ8 was negative.

She tested all other things such as Vitamins and other nutritional cvalues, and all came back normal. I would assume ANY gluten in my body, I would not be able to absorb any nutrients, and all where normal. All pregnancies have been normal and both my children are fine. Show no symptoms and have never had issues.

I am, eating gluten. Not as much as say a bowl of Pasta, but various things that ingred we are not supposed to eat.

[happygirl]

As mentioned above, she was gene tested. Positive DQ2.

In general, if you have ever been diagnosed with it, it means you have it. But, its hard to say if you were diagnosed correctly, given that you don't have a lot of info about it. A biopsy is the gold standard for a diagnosis, as the "blunted villi" in the small intestine are the classic hallmark of Celiac.

You can't outgow Celiac: so if you truly had it then, you have it now, even if you do/don't have any symptoms. If you had an intolerance or allergy, you can "outgrow" it, potentially.

I don't really know what the deal is, but I hope this helped a bit. Best of luck, and let us know what we can do to help, either way.

[Electra]

Thank you for the feedback. Here are the results of some of the tests she did for me:

TTG Normal

DQ2 was positive

and the DQ8 was negative.

She tested all other things such as Vitamins and other nutritional cvalues, and all came back normal. I would assume ANY gluten in my body, I would not be able to absorb any nutrients, and all where normal. All pregnancies have been normal and both my children are fine. Show no symptoms and have never had issues.

I am, eating gluten. Not as much as say a bowl of Pasta, but various things that ingred we are not supposed to eat.

If you have Celiac and it seems like you do, then you may be able to eat gluten for years before you become mal nourished. Unless you eat massive amounts of it then it may not cause any noticeable effects for you, but every time you eat it you are putting yourself at risk for certain cancers and diseases that Celiacs are at a higher risk for. The longer a Celiac eats gluten the higher their chances are at getting Celiac related diseases and cancers. It's definitely a personal decision, but If I was eating gluten and getting the rash then I'd definitely be convinced I had DH and Celiac!!

[happygirl]

The longer a Celiac eats gluten the higher their chances are at getting Celiac related diseases and cancers.

Are there studies for this, that actually assess the time/amount of gluten consumed, versus being a diagnosed/treated Celiac or an undiagnosed/untreated Celiac?

In general, the studies that I have seen only differentiate between treated and untreated/undiagnosed Celiacs.

Not that the overall theory behind the above statement is or isn't hypothetically, but I would like to know if there is actual evidence of this.

[tarnalberry]

If you've been primarily gluten-free (or even just fairly gluten-light), you'll likely find your test results unreliable, particularly the tTg. Standard quantities for ingestion for testing are 3-4 slices of bread a day for three months. (That's a pretty big bowl a pasta every day.)

[Electra]

Are there studies for this, that actually assess the time/amount of gluten consumed, versus being a diagnosed/treated Celiac or an undiagnosed/untreated Celiac?

In general, the studies that I have seen only differentiate between treated and untreated/undiagnosed Celiacs.

Not that the overall theory behind the above statement is or isn't hypothetically, but I would like to know if there is actual evidence of this.

I'm not sure about studies but almost all of the research I read states that eating gluten significantly increases your risks of other disorder and diseases associated with Celiac Disease. Here are some exaples.

"The gluten-free diet must be carefully and continuously followed. When untreated, the disease can cause life-threatening complications. A delayed diagnosis or non-compliance with the diet places you at risk for developing associated conditions such as infertility, miscarriage, osteoporosis, fractures, certain types of intestinal cancer, or other autoimmune disorders."

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"A link has also been discovered between untreated celiac disease and enteropathy-associated T-cell lymphoma. This is true also for patients with dermatitis herpetiformis. Studies have shown, however, that the risk of contracting this condition is reduced when the gluten-free diet is strictly maintained. It has also been found that bowel adenocarcinoma may develop when celiac disease is untreated for a long period of time."

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"The only treatment for celiac disease/DH is the lifelong adherence to a gluten-free diet.

Dietary compliance increases the quality of life and decreases the likelihood of osteoporosis, intestinal lymphoma and other associated illnesses."

Open Original Shared Link disease-treatment.php

"What are the long-term effects of celiac disease?

Untreated celiac disease can be life threatening. Celiacs are more likely to be afflicted with problems relating to malabsorption, including osteoporosis, tooth enamel defects, central and peripheral nervous system disease, pancreatic disease, internal hemorrhaging, organ disorders (gall bladder, liver, and spleen), and gynecological disorders. Untreated celiac disease has also been linked an increased risk of certain types of cancer, especially intestinal lymphoma."

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The only treatment for Celiac is strictly adhering to a gluten free diet, so if you are still eating gluten periodically then you are not treating it correctly and you are putting yourself at risk.