Negative Transglutaminase Antibody, Autoimmune Disease, Pain

[gofigerr]

Hi I was diagnosed with Hashimoto's autoimmnue thyroid disease years ago. I have very high TPO antibodies. I have read and my endo has agreed that a high number of people with Hashi's also have celiac's disease. I was tested for transglutaminase antibodies and tested negative. I had some antibodies but they were at a level considered normal.

I have had issues for years with digestion, recently I went on a no grain/gluten diet and all of my bloating, gas and indigestion went away within 4 days. Usually my spine is very sensitive to the touch, which I attributed to my desk job hunching over at the computer, but after 4 days on the no grain/gluten diet the pain was gone, something I wasn't expecting.

I had trouble maintaining the diet as about the 6th day I hit the wall and felt very fatiqued and weak, lack of carbs I think. So the first day I added back in oatmeal. I became bloated, then I added back in corn, rice and a whole wheat at a very small amount and now it's been about 3 days and my bloating and spine pain are completely back.

Can one have celiac's and test negative for transglutaminase antibodies? My doc says I do not have Celiac but I haven't talked to her about my diet experience. Maybe I am just intolerant to carbs? Yet that wouldn't seem to explain the spine pain, which I'm guessing might be inflamation???

Sorry for the long post! Thanks!

[tarnalberry]

If something bothers you, why eat it?

It's hard to say, from the experiment that you did run, what the problem is.

You can certainly try a dietary challenge, but try to keep a food log, and try to be a little more systematic about it. It might not be all carbs, it might be grains. It might not be all grains, it might just be gluten (or one other grain). (You can get plenty of carbs from fruits and vegetables and legumes without consuming any grain.)

It's up to you at this point what you want to do.

[Gemini]

Hi I was diagnosed with Hashimoto's autoimmnue thyroid disease years ago. I have very high TPO antibodies. I have read and my endo has agreed that a high number of people with Hashi's also have celiac's disease. I was tested for transglutaminase antibodies and tested negative. I had some antibodies but they were at a level considered normal.

I have had issues for years with digestion, recently I went on a no grain/gluten diet and all of my bloating, gas and indigestion went away within 4 days. Usually my spine is very sensitive to the touch, which I attributed to my desk job hunching over at the computer, but after 4 days on the no grain/gluten diet the pain was gone, something I wasn't expecting.

I had trouble maintaining the diet as about the 6th day I hit the wall and felt very fatiqued and weak, lack of carbs I think. So the first day I added back in oatmeal. I became bloated, then I added back in corn, rice and a whole wheat at a very small amount and now it's been about 3 days and my bloating and spine pain are completely back.

Can one have celiac's and test negative for transglutaminase antibodies? My doc says I do not have Celiac but I haven't talked to her about my diet experience. Maybe I am just intolerant to carbs? Yet that wouldn't seem to explain the spine pain, which I'm guessing might be inflamation???

Sorry for the long post! Thanks!

I was also diagnosed with Hashi's way, way before the Celiac diagnosis and if you have very high TPO numbers for your thyroid, something is aggravating your system and preventing that number from falling back to normal(or near to normal). For me, it was gluten. By the time I was tested for celiac disease, I failed all the panel tests BUT many people have negative numbers on the blood work and go on to have positive biopsies. Having a negative test does not rule out celiac disease so your doctor is not well versed in Celiac Disease. You have also had a positive dietary response.

I would stay on a strict gluten-free diet, if you get nowhere with testing, and I think you'll be surprised to see those TPO antibodies fall, over time. My numbers, 1 year before the Celiac diagnosis, were 1200, with a normal range being under 40.

After being gluten-free for 5 years now, my TPO number is 53....still not normal but I went 20 years with symptoms and no diagnosis. I'll take 53 over 1200 any day of the week!

[sandsurfgirl]

If you are going to do your own dietary changes, which I think is a very good idea, you need to choose one thing to do and then stick to it for 2 or 3 weeks before you eat other things. You are just making yourself miserable being gluten free then adding corn, oats, and whole wheat in one quick swoop.

You can go totally gluten free and see if that does it. Remember there is a withdrawal period so you might feel bad for a few days. Gluten free should not mean carb free. The last thing you need is to go into ketosis right now from a high protein low carb diet. Eat brown rice. You can eat some gluten free oats. Get some rice hot cereal. It's great for breakfast. I would not go nuts with gluten free junk food. Eat simply and healthy. Get some brown rice pasta so you don't get bored. Eat plenty of fruits and vegetables for carbs too.

Or you can do an elimination diet. Go down to a simple diet and cut out all major allergens. Then after 2 weeks, if you feel good, you add a new food every 4 days. It is long and time consuming, but you can get a good sense of what's bothering you. Generally you cut out all grains except rice and you cut out chocolate, eggs, dairy, strawberries, citrus fruits, avocado, tomato, msg, maybe cut out all berries if you think they might bother you. I'm trying to think of what else I cut out when I did it for my son when I was nursing him. When you add eggs, you do the yolk and white separate because you can be allergic to the whites and not the yolks.

Personally I would try gluten free first because it's much less restrictive than an elimination diet.

[nora-n]

Hi, people can have just one of the tests positive. Often people here get all of the tests.

Also, if your total IgA is low the usual tests are not valid. This is not uncommon with celiacs.

And, about 20% of biopsy proven celiacs have totally negative blood tests but positive biopsies from the small intestine.

[nutralady2001]

I have both Hashimoto's Disease and Coeliac Disease. I was diagnosed with Hashi's in 1994.

Since the early '50's when I was a child I always had bowel problems. Was told I had "mucous colitis" at college in 1969 then it morphed in to "IBS" in the '80's when that became popular(both diagnoses without any diagnostic testing.

3 or so years ago a friend convinced me to try a gluten free diet after I was adament I didn't have Coeliac Disease. The difference was amazing.

Then 2 years ago I became severely anaemic. A bowel screening showed blood in both upper and lower GI tracts so an endoscopy and colonoscopy was scheduled. The colonoscopy was clear but the endoscopy came back with a report that there was a small amount of damage to the villi consistent with early Coelaic Disease and to have antibodies testing.

I agreed to go back on gluten for the antibodies testing but could only last 2-3 weeks . I had the antibodies testing done fearful they would be negative as I'd only been back on gluten for 2 weeks. All the tests were postive and I had a tTG of 300 (0-15)

I believe the "early damage" seen on the scope was in fact "late healing" my poor insides must have been a mess after a lifetime of misdiagnosis.

Unfortunately I have permanent damage....... osteoporosis, vitamin deficiencies, especially D and B12, early onset arthritis, scoliosis.

I know this doesn't help you much as you say your tTG was negative ( what was it exactly?) but were any of the other antibodies positive? How about an endoscopy? But then you need a gastro who is going to take sufficient samples from your small intestine, some may show villi damage and others clear.

Guess what I'm trying to say is there is a link between Hashi's and Coeliac Disease and also Type 1 diabetes and Coeliac Disease. My older DS has Type 1 diabetes as did my grandmother and 3 aunts (her daughters)

6 days isn't a long time to test the diet but honestly if I felt worse after eating something I wouldn't eat it.

[nora-n]

"had some antibodies but they were at a level considered normal. "

Maybe they were in the grey zone, or in the lower end of positive??

Which tests?