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Genetic Testing?

Carin3

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Carin3 Rookie
Carin3
Posted

Hi, I did post on here about a year ago but am still having trouble convincing myself if I have celiac's or not. Here's the problem. I don't really have any GI problems. Prior to going gluten-free I would poop several times a day(not diarrhea) and since going gluten-free that is down to once a day. Other than that no GI problems (and I never considered that a problem). What led me to a GI doc was chronic anemia not improving with iron pills. I do also have joint pain, tingling and fatigue. I had the endoscopy/colonoscopy done last year and the doctor said it was fine. When I returned for follow up the GI doc said my endoscopy result said: Small bowel mucosa showing minimal loss of the villous structures(mild blunted villi); increased density of intraepithelial lymphocytes; and hyperplasia of the crypts. Marked increase i intraepithelial lymphocytes of superficial villous epithellum identified by CD3 stain (greater than 40/100 epithelial cells). Correlation with clinical findings including celiac sprue serology is suggested. So he then did blood work for celiac (He did a TTG IgA and Iga. My TTG IgA was <3 (and it says <5 is negative). My IgA was 324-and it says normal is 81-463). So my blood works was normal.About the same time I got an IV iron infusion. Haven't had my iron checked recently but a couple months ago it was in normal range (is that from eating gluten-free or from the iron infusion?)I did go off of gluten-free for a couple months in the spring due to a major family crisis but have now been back on it since Sept. I feel a little better gluten-free but nothing significant. So my two questions are do I just need to get over it and accept I have celiac? And would it be benefical for me to get the genetic testing done? If so what company do you recommend? BTW...I am 35 years old and have 3 young kids. Any thoughts would be appreciated. All these forums have helped me so much over the last year!!

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cassP Contributor
cassP
Posted

1st off- there was an article out of columbia university months ago suggesting that as little as 1 in 6 Celiacs actually have gut symptoms, whereas the others dont have any, but may have other issues

as you know from this forum i assume- people have experienced neuropathy & neurological issues as well as anemia & vitamin deficiencies.

and you probably feel like you need a clear diagnosis to motivate u to be on the diet- especially cause you're not suffering stomach wise... ALTHO- "mild villi blunting" sounds like celiac to me. i, too, needed a dx to really get serious on the diet (and i actually had all the stomach pain)

my tests were a "weak positive", and my docs didnt want to dx me without the biopsies, so they suggested i go gluten free.. but it wasnt enough for me to get serious & break my gluten addiction forever. i ordered a genetic test thru Enterolab. they only test for 9 DQ genes i believe, and only 1 half of the gene. and if you did it thru your doc- they would only test for 2 DQ genes but the complete chain of the genes.

it may not give you any answers- as it only shows your genetic disposition, but im very glad i did mine-

Kay DH Apprentice
Kay DH
Posted

Kimball Labs ( Open Original Shared Link )does genetic testing for HLA-DQ2 and HLA-DQ8 celiac "genes", as well as other genetic testing. I have the HLA-DQ8 marker, which about 12& of the population has. Around 30% of the population has HLA-DQ2, and almost 100% of people with celiac have either or both genetic markers. My GI and other symptoms started a year ago, a couple of weeks after getting the flu. I and my family have a lot of indications of celiac, but no known family history. The GI dismissed my dad dying of GI cancer 20 years ago as due to food preparation techniques early last century, and dismissed or assigned all my symptoms as diverticulitis. The 1 biopsy he did was negative, there were no diverticuli, and no diagnosis beyond minor GERD (which is also somewhat common with celiac). By negative celiac panel blood test was a couple of months after going gluten-free. So, I also am not sure I have celiac, but very probably and my life and health is much better going gluten-free. Positive changes started 3 days after going gluten-free last fall, but it took about a year in all. Who knows, if I had been gluten-free before the flu hit, then maybe my symptoms would not have been so bad afterward (GI, mood, lethargy, joints, fog, muscle, rash, etc). ;)

GFinDC Veteran
GFinDC
Posted

Here is a thread about silent celiac that might interest you. Silent celiac is when there are no obvious GI symptoms but the person is still having damage from gluten. That might be what is happening in your case?

Silent Celiac - How Do You Know If You Have Been Glutened?

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    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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      Contact them.
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