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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.

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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.

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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. :)

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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.

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

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

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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.

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What's for dinner tonight chat?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...t-periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes

http://www.celiac.co...e-free-recipes/

Super Easy Meal Ideas Anyone?

http://www.celiac.co...l-ideas-anyone/

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    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
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