New With Questions

breiec · December 27, 2012

Hi, I am a 41 year old male. I don't have the strong stomach or digestive symptoms that you hear about with Celiac disease however have many problems with leg cramping, pretty significant twitching of muscles while body is at rest, shaky hands, finger nail problems with raised bumps and white areas on a few fingers, cloudy head, trouble concentrating, bradycardia, very dry flaky skin on both sides of my nose. I have also had test in June cause I was feeling very tired and dizzy when I got up from laying down or sitting. They found then that I had normocytic anemic and also had elevated Prolactin (42.7) Anyway I had a tissue transglutaminase iga test done a couple of weeks ago and my results are as follows....

TIS TRANSGLUT AB,Iga My Value: >100 U/ml

Reference range: <4.0 (Negative)

(Note)

Interpretation: Positive (>10.0)

TIS TRANSGLUT AB,IgG My Value: 1.6 U/ml

Reference range: <6.0 (Negative)

Also Ferritin Test Results...

My result 20 ng/ml Range: 20-300 ng/ml

Vitamin B12 Test Results...

My result 396 Range: > 200

Vitamin D Test Results...

25-HYDROXY D2 My result < 4.0

25-HYDROXY D3 My result 26

25-HYDROXY D TOTAL My result 26

Thyroid Test are negative

MRI test was negative for tumor that would cause the elevated Prolactin.

I have had a Colonoscopy that was done in June that showed nothing at all.

I had the Endoscopy done last Monday after which the Dr. that did the scope said that he did not see anything that would indicate Celiac disease and that maybe I am just sensitive to gluten. I have not received the results of the biopsies yet.

My questions are from what I have heard that a TTG test >100 is a pretty high value and I am wondering if the Dr should have seen anything during the endoscopy.

Also I have read that TTG can have false Positives for other Autoimmune Diseases and wondering if it is not Celiac if it could be something else with my TTG levels so high... or is the TTG so specific for Celiac that I have it and they did not find it or I am just sensitive to glutten. Or can you not have much damage to your intestine but have the neurological symptoms.

Thanks for any info or personal experiences you can provide.

rosetapper23 · December 27, 2012

Looks as though you may be suffering from a few nutritional deficiencies. A good start is to take Country Life Natural Vitamin D (it also contains Vitamin A, which I believe some of your symptoms indicate that you may be in low in) as well as medium-chain triglycerides, which will help your body absorb them. Also, you may wish to supplement with chelated manganese for your muscles. If your muscle issues don't resolve, please let me know, because I have a suggestion that involves parent essential oils (Omega 3s and 6s) that works great....but I thought you might wish to try these other, easier things first.

mushroom · December 27, 2012

Damage to the gut is pretty severe if it can be seen with the naked eye. Wait for your biopsy results to come back and see what the pathologist has to say and then if necessary we can start speculating on your tTG.

nvsmom · December 28, 2012

You do have a very positive ttg IgA test. That is most likely an indicator of celiac but it could also be from diabetes, thyroid disease or even autoimmune liver problems, although it is less likely. There a few other blood tests that can be done:

AGA (antigliadin antibodies)-IgA
AGA-IgG
EMA (anti-endomysial antibodies)-IgA

EMA IgA is considered to be the most specific to celiac.

If your biopsy and other blood tests come up negative for celiac disease, you might want to look into thyroid testing (free T4, free T3, TSH, and TPO Ab) because many of your symptoms are those of hypothyroidism... Actually even if your celiac panel is positive you might want to get it checked since many celiacs have thyroid problems, a routine check is how I discovered my hashimotos (hypothyroidism), and I had MANY of the same symptoms as you.

After your testing is done, regardless of the outcomes, I think you should go on the gluten-free diet for at least a few months since ttg IGA can (and often does) indicate celiac disease. It can't hurt.

Best wishes to you. I hope you feel better soon.

breiec · December 29, 2012

Thanks everyone. I just got my results and biopsy supported blood work and I have Celiac.

nvsmom · December 29, 2012

(hugs) I'm glad you know for sure and hope you have a fast recovery.

GFinDC · December 31, 2012

Hi Breiec,

Welcome to the forum! The good news is you now know why you have been sick. So you can start on the gluten-free diet and begin getting better. Don't be upset if it takes a few months to get past some of the symptoms. Actually it can take a year or more to recover. But everyone has their own body and timelines vary a lot.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.