Is Ttg Positive Enough?

[rez]

After our first doctor ran the wrong test, our second doctor ran the correct Celiac panel. The problem is my son's tTG was only slightly elevated. It was 8.4 and positive is anything less than 7. He had been gluten free for 4 months though when the blood was drawn. Which would show positive longer, blood or biopsy? I'm wondering if there's any possible way that his scope will still show damage. By the time he gets scoped, he'll probably have been off gluten for 6 months! Then, we will have to do a gluten challenge. Do you think his tTG would have been higher 4 months ago, and is tTG very specific to Celiac or could it indicate another problem. We also discovered through blood work that my 10 year old is hypothyroid. Her free T4 is low and her TSH is 7.8. Please help!!!!!!!!

[rez]

After our first doctor ran the wrong test, our second doctor ran the correct Celiac panel. The problem is my son's tTG was only slightly elevated. It was 8.4 and positive is anything less than 7. He had been gluten free for 4 months though when the blood was drawn. Which would show positive longer, blood or biopsy? I'm wondering if there's any possible way that his scope will still show damage. By the time he gets scoped, he'll probably have been off gluten for 6 months! Then, we will have to do a gluten challenge. Do you think his tTG would have been higher 4 months ago, and is tTG very specific to Celiac or could it indicate another problem. We also discovered through blood work that my 10 year old is hypothyroid. Her free T4 is low and her TSH is 7.8. Please help!!!!!!!!

Sorry, I meant NORMAL is less than 7. Sorry.

[GFBetsy]

The TtG test is very specific for celiac. Celiac's bodies make tissue-trans-glutaminase in order to heal the intestines that have been damaged through the ingestion of gluten. It is not very likely that the test is falsely positive. The fact that your son's numbers are still above normal means that his body is still working on healing his intestines. Which means that it is possible that a biopsy would find the damage.

The damage they would be looking for, however, can be patchy, and since it is probably in the process of becoming healed, it is quite likely that a biopsy would miss the damage (especially if you have to wait an additional 2 months or so before a scheduled biopsy). And that would leave you still wondering whether he has the disease, but with a biopsy bill to pay.

I noticed in your other post that he was having a lot of stomach pain, etc. before going gluten free. Is he still having these problems, or has going gluten-free helped him? How hard will it be to put him through the 2 month gluten trial the doctors are suggesting? If you really feel you need to have a positive diagnosis, that may be your only option.

As far as your daughter goes, thyroid problems are associated with celiac. Also, if your son has it (and his tTG test indicates that he does), your daughter has a 1 in 10 chance of having celiac as well. If I were you, I'd have her tested as well. And, hey! if her tests come back positive, you may as well just take the whole family gluten free, thereby solving the problem of what to do about your son!

One last note - in your other post you noted that your son's lips would swell after dairy ingestion. That sounds like an allergic reaction to me. I'd get him allergy tested, because lip swelling that is obvious enough for you to see it could indicate a pretty severe allergy - you might need an epi-pen or something like that to help control those reactions.

Best of luck!

[rez]

Thanks so much for your educated and timely reply. He definitely seemed to improve on the diet. He NEVER would sleep through the night before. He just seems ultra sensitive to all foods and his system seems so raw. Within a few hours of dairy, he is in so much pain and then the next day the swelling and canker sores break out. He had 8 of them in his mouth at one time and then 3 huge ones the next time we tried dairy. It scared me and I know to keep him away from dairy now. Most of his discomfort comes in the evening. I wondered if it was anxiety related, but it happened on Christmas Eve at my parent's house in the middle of all sorts of fun stuff. Does anyone else ever have trouble at night? His chest hurts a lot and he feels pressure. I feel so bad for him and hate to see him suffer. It breaks my heart. He's given up all his favorite foods and he just wants to feel better. Last night, he said he wished he could have a different disease.

[Rachel--24]

He's given up all his favorite foods and he just wants to feel better. Last night, he said he wished he could have a different disease.

Awww....that just made me tear up...poor little guy.

After he's been on the diet awhile he should feel alot better. I'm sure his numbers were much higher 4 months ago and are coming down as he's healing.

I agree about having your daughter tested as well.

[rez]

Thanks for the sweet, caring words.

[rez]

I did have my daughter tested for Celiac. My new doctor is awesome and has Celiac himself so he has a vested interest in all this. We started looking deeper into Haley after she was complaining of joint pain and acid reflux. Her tTG was only 1.something and she's not even gluten free. That's not to say she won't develop it in the future though. I saw on here where a child's tTG was negative and then 6 months later it was super high in the 200's or something. We're all a wreck and stressed around here. Then, trying to schedule all these appointments over the holidays is not easy. I will be anxious to see what the docs say about her hypothyroid. I would be interested to see if they would become normal after a gluten free diet. Stay tuned!!!!

[chrissy]

if his chest is hurting, he might have reflux, also. two of my celiac girls (and myself) all have reflux. chest pain was one of the first symptoms i had when my reflux developed 15 years ago-----and i didn't have obvious heartburn.