Off The Chart Ttg Again, Type 1 Diabetic

[kaiess]

My son, 10, was tested for Celiac back in early 2008. I had posted his story last year and the year before and just wanted to update our story. His Ttg was around 95 in 2008 (range 0-20) so they scheduled a scope for him a couple months later. It was negative yet they found ulcers. They treated his ulcers (non H.pylori...they don't know what actually caused them) with Prevacid for 6 weeks and "assumed" he was healed. 6 months after the first Ttg we had another one done. He was now up to 150. He also has both genetic markers. They waited 6 more months and repeated the Ttg and it was +>222 (off the chart). He had a second scope done about 5 months after that blood test. The surgeon said it didn't look good as there was a lot of redness and inflammation. We prepared for the diagnosis and then they called and said the biopsy was negative!?!?! Their answer to my questions about the redness and inflammation was "We don't know, all we can do is retest his Ttg next year and watch for symptoms of Celiac and then maybe we'll re-scope". This is all from the Ped GI specialists at a Children's Hospital in Canada. I had his Ttg run again a coupld of weeks ago and it came back off the chart again! I have now asked for a referral to our local surgeon who is very well informed of Celiac disease I have found out. We have our appointment next week with him and I suspect he will schedule a scope shortly. He is asymptomatic, but so are lots of kids who have it! Can it be possible for a Type 1 diabetic to have constant false positives on the Ttg and moreso one that has steadily risen over the last 2 years!?!? It is very hard living in this "gray" area not knowing if he has it or if he doesn't. We are reluctant to change our sons diet without a diagnosis b/c he already deals with so much already (diabetes). Why do they bother repeating the Ttg if they tell us it could be false positives b/c he is Type 1? Just frustrated. Will keep you posted as to what our local surgeon tells us next week. Kathy

[nora-n]

The numbers look a bit high for false positives....and why ulcers??

Maybe ask for a video capsule endoscopy, as some celiacs with repeated negative endoscopies do get a diganosis via video capsule endoscopy. the celiac is clearly seen, or the lesions are ot the wrong end of hte small intestine, where no scope reaches. The scope only goes down to the very first part of the small intestine.

[CDFAMILY]

1. How old is your son?

2. Does he have any symptoms you would not think are Celiac, like low endurance, fatigues easily, problems concentrating, behavior problems, easily irritated, whiney, quick to get a stitch in his side while running, easy to get sick with infections, headaches, complains of aches or knee pain, sinus problems, any numbness like fingers tingling or body parts easily fall asleep. Is he a big eater or a picky eater? Does he favor one food more than another? Hard time regulating insulin? Does he sleep more than other kids?

3. Have the doctors done all the vitamin and other tests that would point to malabsorption??? Such as checking vitamin E, K, B12, all B

[nora-n]

c.d, interesting about the thoughts on B-12, if it repairs the intestines.

I had negative biopsy and I did eat b-12.

It is known thet biopsies get negative if patietns are on prednisolon or any kind of steroids, so it is possible that medicines or vitamins alter the biopsy results.

[kaiess]

WOW! Thank you for your responses. My son is 10 now and has been type 1 since he was 4. He never had the TTG run until just 2 years ago b/c we had switched endo's shortly after diagnosis and I guess she had assumed that someone had tested him already. I don't feel my son has any of those symptoms listed. He is a really good kid, is excellent in school, mature for his age, responsible, no behavioral issues at all. The ONLY thing I can think of is he spends a lot of time in the bathroom when he's in there...20+ minutes usually, and he seems to have to go urgently (BM's)....but that could be b/c he waits too long to actually go to the bathroom. He has the occassional stomach ache but not really any different than our daughter, 6. If I were to think anyone had Celiac it would be her LOL! She has major attitude, behavioral issues, talking back, mood swings, etc. Her Ttg is negative, as are my husband and I's. We had her checked for ADHD and although she has some symptoms there were not enough to diagnose her or put her on medication (felt it was just her personality). I will be sure to take your response to the surgeon next week for our appointment. I would like a scope done as well as bloodwork for all that you have mentioned. I truly appreciate your responses! Thank you, Kathy

[missy'smom]

Here are a couple of links to info. about the connection between wheat/gluten/celiac disease and T1 diabetes.

Open Original Shared Link

Open Original Shared Link

[Gemini]

  On 2/10/2010 at 8:30 PM, kaiess said:

WOW! Thank you for your responses. My son is 10 now and has been type 1 since he was 4. He never had the TTG run until just 2 years ago b/c we had switched endo's shortly after diagnosis and I guess she had assumed that someone had tested him already. I don't feel my son has any of those symptoms listed. He is a really good kid, is excellent in school, mature for his age, responsible, no behavioral issues at all. The ONLY thing I can think of is he spends a lot of time in the bathroom when he's in there...20+ minutes usually, and he seems to have to go urgently (BM's)....but that could be b/c he waits too long to actually go to the bathroom. He has the occassional stomach ache but not really any different than our daughter, 6. If I were to think anyone had Celiac it would be her LOL! She has major attitude, behavioral issues, talking back, mood swings, etc. Her Ttg is negative, as are my husband and I's. We had her checked for ADHD and although she has some symptoms there were not enough to diagnose her or put her on medication (felt it was just her personality). I will be sure to take your response to the surgeon next week for our appointment. I would like a scope done as well as bloodwork for all that you have mentioned. I truly appreciate your responses! Thank you, Kathy

Type 1 diabetes AND Celiac Disease will both raise Ttg levels, along with other autoimmune diseases. It could be from one or both but since your son had a lot of inflammation in his gut on scoping, it sounds like he has Celiac also. The inflammation stage occurs before actual villi flattening. A doctor will only diagnose Celiac if the villi are flattened. Sounds like early Celiac to me.

If so, it is important to go gluten-free as having untreated Celiac will make the diabetes difficult to manage. He is young so many of his symptoms could be masked by his hormone levels and youth. This is common and if untreated, can become much worse in adulthood.

If you canot find a doctor who can help or diagnose Celiac from his bathroom habits, scoping results and Type 1 diabetes, you may want to consider a dietary trial to see what happens with repeat Ttg tests. Good luck to you and I hope you get some answers.

[CDFAMILY]

I agree with Gemini about the inflammation already being present and that a smart doctor would already have diagnosed this as Celiac Disease especially after reading what Dr. Guandalini says that the vast majority of type 1 diabetes DO NOT HAVE severe changes to their intestines.

  Quote

Have you seen patients with type 1 diabetes presenting with more frequent hypoglycemia due to malabsorption of food when taking insulin?

No. Data obtained by looking at intestinal biopsies in patients with type 1 diabetes and celiac have shown that the vast majority of them do not have severe changes to their intestines. Since the intestinal damage is minimal, malabsorption is also typically minimal. However, some physicians have reported the occasional patient with more severe intestinal damage and malabsorption, leading to occasional hypoglycemia, before the institution of a gluten-free diet.

Open Original Shared Link

And yes emergency trips to the bathroom are a sign of Celiac. I had this problem and it is not caused by waiting. I do not have this problem anymore. Also, 20+ minutes in the bathroom would be considered a constipation problem in my humble opinion. So with these couple of symptoms and an inflamed intestine, with very high TtG

[kaiess]

Update on us! Well we got really lucky with our local surgeon. He had a lot of OR time this month as another surgeon is off so we were able to have the scope within 2 weeks of our appointment! I work in the hospital so I asked if I could also watch the whole procedure and the answer was NO PROBLEM! It was really neat to see first-hand the things going on inside him. He had a small stomach polyp, a small hiatus hernia and a tiny bit of redness in the duodenum. The biopsy results came back POSITIVE this time! Thankfully it's all over and we got the diagnosis. WHY DO THEY PROLONG THE INEVITABLE???? I'm really PO'd at the docs here in North America b/c my son would have been diagnosed long ago if he lived in Europe.

It was horrible telling my son. At 10 years old he knows what he'll be missing out on and what he won't be able to eat anymore (kids and the fast food...not that he ate a lot of it). He bawled for hours but once he stopped he seemed to accept it and get on with life. Kids are amazing.

We got the diagnosis on Thursay night and we were leaving in the morning for an 8 hr road trip to buy our new truck. We decided that we as a family would have one more "normal" weekend before starting gluten-free. It meant a lot to us and yesterday we started the gluten-free diet. So far so good! It's just such a pain in the rear having to call companies to see if the main-stream product is actually gluten-free. I find a few of them won't give you an exact answer and you get the "oh, but we cannot guarantee...".

Kathy

[nora-n]

Very interesting story and answers.

Good you found out at last, and that the child can start the gluten free diet and get better.

There are also some good food lists at the delphi celiac forum, and parents have already collected the results from phone calls to the manufacturers.

Yes, it is annoying that they cannot answer.

[Gemini]

  On 3/16/2010 at 2:22 PM, kaiess said:

Update on us! Well we got really lucky with our local surgeon. He had a lot of OR time this month as another surgeon is off so we were able to have the scope within 2 weeks of our appointment! I work in the hospital so I asked if I could also watch the whole procedure and the answer was NO PROBLEM! It was really neat to see first-hand the things going on inside him. He had a small stomach polyp, a small hiatus hernia and a tiny bit of redness in the duodenum. The biopsy results came back POSITIVE this time! Thankfully it's all over and we got the diagnosis. WHY DO THEY PROLONG THE INEVITABLE???? I'm really PO'd at the docs here in North America b/c my son would have been diagnosed long ago if he lived in Europe.

It was horrible telling my son. At 10 years old he knows what he'll be missing out on and what he won't be able to eat anymore (kids and the fast food...not that he ate a lot of it). He bawled for hours but once he stopped he seemed to accept it and get on with life. Kids are amazing.

We got the diagnosis on Thursay night and we were leaving in the morning for an 8 hr road trip to buy our new truck. We decided that we as a family would have one more "normal" weekend before starting gluten-free. It meant a lot to us and yesterday we started the gluten-free diet. So far so good! It's just such a pain in the rear having to call companies to see if the main-stream product is actually gluten-free. I find a few of them won't give you an exact answer and you get the "oh, but we cannot guarantee...".

Kathy

Good luck, Kathy, and I am very happy you got answers for your son at such a young age. I know it is hard with a double diagnosis of Celiac and Type 1 diabetes but think of all that damage that will be averted! And yes.....kids are amazing! He handled it well and your attitude will greatly affect how well he accepts this also. I wish you well!