Blood Test Negative - Should I Go Off The Gluten-Free Diet?

[Cat Eyes]

I recently went to the doctor and had bloodwork done. This is the second time I have been tested for Celiac in the past 5 years, and both times I came back negative. On a scale of 1-17, my TGA level was 5, which my doctor assures me is very low. However, she said that if I feel I am benefitting from the gluten free diet then I should stick to it.

The problem is that I'm having a hard time gaining weight on the diet. About 6 months ago I went through a really bad breakup and dropped 20 lbs due to lack of appetite. That weight loss caused my hair to start falling out, which I am told is quite common when your body isn't getting the calories it needs. My doctor has told me that in order to get well again, I need to start eating well and gaining the weight that I lost back. Unfortunately, I really feel limited by what I can eat on a gluten free diet. In the past month I've gained 6 lbs. back but that's only because I've been force feeding myself fattening foods like peanut butter and purposefully eating more calories than I need. I worry that once I start eating a normal amount again, the weight will once again drop off.

When I was on a non gluten free diet I had no problems gaining weight and had a very full, thick head of hair. However, I had problems like stomachaches, headaches, fatigue, dizzyness, etc. and a HUGE appetite. My mom has been diagnosed Celiac, and I have noticed that certain drinks/foods, particularly beer, cause my body to go haywire. To me, this evidence points to Celiac, or at the very least, a gluten intolerance.

Is it common to get negative blood tests but still have Celiac? Should I stick to a gluten free diet or eat what I want so I can gain weight again? I feel like I'm starving on this gluten free diet!

[ravenwoodglass]

Yes you can be negative on blood tests and still be celiac. Plus if you are already gluten free that will in itself cause a negative because you aren't forming the antibodies that are being looked for.

I would stick with the diet since you have had resolution of symptoms. A severe illness or stress, like your breakup, can cause hairloss and it usually takes about 3 months to start regrowing noticeably. Make sure you are getting enough nutrient wise, I take Country Life 'Hair and Nails' along with some extra biotin when I have an episode of hair loss and it seems to help.

The pnut butter and other calorie dense foods are what you need to gain weight. If you aim for an extra 1000 calories a day that should put the weight back on pretty quick. After a loss of 20 lbs I used Wylde pretzels, a bag is about 1000 calories, and munched on those and dipped them in pnut butter along with my regular meals. when I got to the weight I wanted I just cut back to my normal calorie intake and the weight I wanted stayed on but I stopped gaining.

A nutritionist may be able to help you out with making sure you are getting the nutrients you need and I am sure others will chime in with what they used to regain.

[nora-n]

Of course yor blood tests are negative when you are on the gluten free diet.

Your doctor should have pointed that out for you.

[Skylark]

Your doctor is also right that with a celiac mom you should stick to gluten-free if you are benefiting from it.

[Cat Eyes]

Of course yor blood tests are negative when you are on the gluten free diet.

Your doctor should have pointed that out for you.

I told my doctor the same thing, and she assured me that if I had Celiac, the antibodies would be present in my blood stream in higher numbers, regardless of whether I was on a gluten free diet or not. I politely told her that I didn't think that was the case because I had heard numerous stories of negative bloodwork but positive biopsies. But now I'm not sure who to believe!

[nora-n]

They use the blood tests to monitor celiacs on the gluten free diet, so obviously what she said is nonsense. They should go down to 0.

Now the ttg test is special, since it is dependent on actual tissue damage. Damaged cells cause ttg. On the gluten free diet, there is no mroe cell damage.

Also, one needs to eat a lot of gluten to be positive, but some get high numbers despite of small , very small amounts of gluten sneaking in.

I read a newsletter from a celiac group where the group leader one year had high ttg antibodies (yes, celiacs get yearly antibody test to see if they are adhering to the diet) and it turned out it was feeding wild birds that was the gluten source.

Maybe she meant antigliadin IgG, since they can take a couple of years to go down, but they will be zero eventually too.

In patchy celiac , biopsy-proven, the blood tests are negative in about half the cases.

And, one cannot rely on antibody tests for monitoring all celiacs on the gluten-free diet either since some do not have high antibodies.

[Cat Eyes]

They use the blood tests to monitor celiacs on the gluten free diet, so obviously what she said is nonsense. They should go down to 0.

Now the ttg test is special, since it is dependent on actual tissue damage. Damaged cells cause ttg. On the gluten free diet, there is no mroe cell damage.

Also, one needs to eat a lot of gluten to be positive, but some get high numbers despite of small , very small amounts of gluten sneaking in.

I read a newsletter from a celiac group where the group leader one year had high ttg antibodies (yes, celiacs get yearly antibody test to see if they are adhering to the diet) and it turned out it was feeding wild birds that was the gluten source.

Maybe she meant antigliadin IgG, since they can take a couple of years to go down, but they will be zero eventually too.

In patchy celiac , biopsy-proven, the blood tests are negative in about half the cases.

And, one cannot rely on antibody tests for monitoring all celiacs on the gluten-free diet either since some do not have high antibodies.

Thanks for the info. It's very concering to me that my doctor, who has been a great doctor and has helped me deal extremely well with other health problems, has no idea about how these blood tests work.

[ravenwoodglass]

Thanks for the info. It's very concering to me that my doctor, who has been a great doctor and has helped me deal extremely well with other health problems, has no idea about how these blood tests work.

Most doctors are clueless about celiac. If he is a good doctor in other respects you can try and educate him a bit.