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October3

What Else Causes Elevated Ttg?

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So I had a long chat with my son's pediatrian yesterday. I was asking if there are other things we should be testing him for in light of the positive tTG and negative scope. After talking through the possibilities she didn't feel he really had the symptoms to justify testing his thyroid or blood glucose, though he tends to have hypoglycemic-like meltdowns before meal times and craves sugar like crazy. But basically she doesn't think he would test positive for either diabetes or thyroid issues. The other autoimmune diseases linked with elevated tTG don't make sense for him at all - no reason to think he has liver disease and the scope ruled out other possible GI issues like Crohn's. But when I asked what the tTG meant in that case, she doesn't know. She says it means something - it isn't irrelevant and we should't ignore it, but what exactly is unclear. She said, as did the GI, that he could still develop celiac in the future.

My understanding of the tTG is that it measures antibodies that are released when damage occurs to the GI tract. Am I correct? If that is true and there is no other explanation then I don't really care if he meets criteria for the actual disease - I want to stop the damage. Right? So still I'm not understanding why both the GI and the pediatrician are discouraging a trial diet. (I realize I'm preaching to the choir here, but I really am trying to understand the thought process so I can reason thru it. If someone gets it please let me know).

So on that note I'm planning our next phase - the trial diet. Here's my plan up for critique. I'm thinking we'll start in mid-March and go for 2 months. The reason for the delay is that

a) I want his hemoglobin to be in the normal range when we start so that we can be fairly confident that any behaviors we're seeing in the few weeks before we start are not caused by anemia and also so that if he drops he has a little cushion and

B) we need to get a blood draw done before we start and he's already been through 2 blood draws and the scope process lately - I want to give him a little break

c) that gives us a chance to prepare so we can be sure we're doing the diet right.

We'll continue his iron supplements and juice plus until the diet, then stop all supplements during the diet. During the 2 month diet we'll look for any changes in behavior and at the end of the 2 months we'll recheck his iron levels. If they have gone up significantly that tells me gluten definitely is interfering in the absorption. In mid-may we'll reintroduce gluten and see if any symptoms appear. If there are no behavior changes and iron either holds steady or drops during that time we'll leave the whole celiac thing alone and just watch him for onset of symptoms later.

Thoughts?

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Since you had the positive TTg have you asked your doctor if he would give a 'diagnosis' based on that and response from the diet? Some will give you the needed 'gluten free diet' slip for school on that basis.

He said he doesn't have enough evidence to give a diagnosis of celiac at this point, and he discouraged doing the diet. When I talked about doing a trial he couteroffered doing just a minimization of gluten but not a strict 100% gluten free diet. I think he was thinking in terms of prevention from developing in the future. I haven't told him my full plan (above) but will need to in order to get the order for checking his iron pre and post diet. Not sure what he will say if the diet ends up helping the iron levels.

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So I had a long chat with my son's pediatrian yesterday. I was asking if there are other things we should be testing him for in light of the positive tTG and negative scope. After talking through the possibilities she didn't feel he really had the symptoms to justify testing his thyroid or blood glucose, though he tends to have hypoglycemic-like meltdowns before meal times and craves sugar like crazy. But basically she doesn't think he would test positive for either diabetes or thyroid issues. The other autoimmune diseases linked with elevated tTG don't make sense for him at all - no reason to think he has liver disease and the scope ruled out other possible GI issues like Crohn's. But when I asked what the tTG meant in that case, she doesn't know. She says it means something - it isn't irrelevant and we should't ignore it, but what exactly is unclear. She said, as did the GI, that he could still develop celiac in the future.

My understanding of the tTG is that it measures antibodies that are released when damage occurs to the GI tract. Am I correct? If that is true and there is no other explanation then I don't really care if he meets criteria for the actual disease - I want to stop the damage. Right? So still I'm not understanding why both the GI and the pediatrician are discouraging a trial diet. (I realize I'm preaching to the choir here, but I really am trying to understand the thought process so I can reason thru it. If someone gets it please let me know).

So on that note I'm planning our next phase - the trial diet. Here's my plan up for critique. I'm thinking we'll start in mid-March and go for 2 months. The reason for the delay is that

a) I want his hemoglobin to be in the normal range when we start so that we can be fairly confident that any behaviors we're seeing in the few weeks before we start are not caused by anemia and also so that if he drops he has a little cushion and

B) we need to get a blood draw done before we start and he's already been through 2 blood draws and the scope process lately - I want to give him a little break

c) that gives us a chance to prepare so we can be sure we're doing the diet right.

We'll continue his iron supplements and juice plus until the diet, then stop all supplements during the diet. During the 2 month diet we'll look for any changes in behavior and at the end of the 2 months we'll recheck his iron levels. If they have gone up significantly that tells me gluten definitely is interfering in the absorption. In mid-may we'll reintroduce gluten and see if any symptoms appear. If there are no behavior changes and iron either holds steady or drops during that time we'll leave the whole celiac thing alone and just watch him for onset of symptoms later.

Thoughts?

This sounds like a good plan. If he does have GI damage then he may not heal enough in that two months to make a lot of difference in his iron levels but he may. I do think your doing the right thing by taking him gluten free and your plan to challenge after 2 months strictly on the diet is a good one.

I have never been able to understand why some doctors are so reluctant to diagnose us in the early stages. To me it equates to telling someone with prediabetes to stuff themselves with sugar until they are a full diabetic and then they will address the issue.

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My initial thoughts were the same as those of ravenwoodglass, that the iron levels might not necessarily be definitive. If he has malabsorption it would not be due to the current presence of gluten, but due to the damage gluten has done in the past. Since healing the damage takes some time it might not occur sufficiently in the two months to make a difference to his iron levels. But I note his biopsy was negative so maybe his GI system is not particularly damaged and this plan could work. It depends how accurate the scope was.

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My initial thoughts were the same as those of ravenwoodglass, that the iron levels might not necessarily be definitive. If he has malabsorption it would not be due to the current presence of gluten, but due to the damage gluten has done in the past. Since healing the damage takes some time it might not occur sufficiently in the two months to make a difference to his iron levels. But I note his biopsy was negative so maybe his GI system is not particularly damaged and this plan could work. It depends how accurate the scope was.

Right. I thought about that, too. I'm hoping that if gluten is really an issue for him something will be obvious with a behavior change. I just have a hard time believing that his only symptom could be malabsorption. But like you said, the damage might not be very bad at this point too. I am still pretty confident the GI's who did the scope knew what they were doing and were trying to find any evidence of celiac disease if it was there, and his anemia has been mild and rebounds easily once we start supplementing. So assuming the damage is minimal we might still see some improvement in the iron.

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I finally got the report from the scope. It doesn't give too many details. Basically says duodenum was normal, stomach was normal, esophagus was normal, terminal ileum, descending colon, signmoid colon, cecum, ascending colon, hepatic flexure, and anus all normal.

The only things that were a commented on more than that were that the colonoscopy was performed with moderate difficulty due to significant looping (of the colon). They had mentioned that at the time because it took a lot longer than expected. Also there is one little note about focal mild chronic inflammation in the stomach but everywhere else it says stomach normal.

The Pathology report says "no histopathologic abnormality" under each area biopsied. I guess that is where the inflammation comment on the stomach came from. There were a few other comments about the stomach too (no helicobacter pylori, no active gastritis, no intersttinal metaplasia, dysplasia, or malignancy).

As far as # of biopsies this is what it says:

Duodenum x 4

Antrum x 2

Esophagus x 3

Terminal Ileum x 4

Right Colon x 4

Left Colon x 5

Anything seem worthy of comment?

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