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I Am So Confused :(

Laura--G

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Laura--G Rookie
Laura--G
Posted

My son is 8 and is a Type 1 Diabetic. His doctor is screening all her Diabetic patients for Celiac. His first round of tests came back borderline so she ordered other tests to see if anything could be causing that and got a weak positive for Celiac. What does that mean? Don't you either have it or not have it? Now I have to take my child in for a biopsy. If the positive is that weak, isn't there a chance the biopsy won't show any damage?

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ILOVEOMC Enthusiast
ILOVEOMC
Posted

My son was 11 when diagnosed and he had a slight positive also. His IGA was 5.4 when normal was anything under 5.0 They did the biopsy and found mild blunting of villi. They think my son was just starting Celiac Disease and we caught it early. I thought our experience might help you. Good luck!

Smunkeemom Enthusiast
Smunkeemom
Posted
My son is 8 and is a Type 1 Diabetic. His doctor is screening all her Diabetic patients for Celiac. His first round of tests came back borderline so she ordered other tests to see if anything could be causing that and got a weak positive for Celiac. What does that mean? Don't you either have it or not have it? Now I have to take my child in for a biopsy. If the positive is that weak, isn't there a chance the biopsy won't show any damage?

One of my daughters had a weak pos. and the other a strong pos. they both then had biopsy.

The one with the strong, had a lot of damage, the one with the weak had none.

The one with the weak still had celiac disease although it wasn't "active", it has since "turned on" and we had to put her on a gluten free diet.

I think if you are pos. you have it, and that it may not be actually damaging your body yet, but one day might.

interesting though, since I am going to take one of my girls in soon to get checked out for type 1 diabetes since it runs in our family (just like celiac) and she has some early symptoms.

Laura--G Rookie
Laura--G
Posted
  • Author
One of my daughters had a weak pos. and the other a strong pos. they both then had biopsy.

The one with the strong, had a lot of damage, the one with the weak had none.

The one with the weak still had celiac disease although it wasn't "active", it has since "turned on" and we had to put her on a gluten free diet.

I think if you are pos. you have it, and that it may not be actually damaging your body yet, but one day might.

interesting though, since I am going to take one of my girls in soon to get checked out for type 1 diabetes since it runs in our family (just like celiac) and she has some early symptoms.

So basically, a weak positive just means it may be the early signs right? He always tells me his bones hurt and I just figured it was growing pains. Either way, I assume even a weak positive would mean we would have to be gluten-free, so would any of you just not do the biopsy or should we anyway?

Smunkeemom - If your daughter ends up having Type 1, feel free to talk to me about anything you need help with. My son's been a Diabetic since he was 3.

Smunkeemom Enthusiast
Smunkeemom
Posted
So basically, a weak positive just means it may be the early signs right? He always tells me his bones hurt and I just figured it was growing pains. Either way, I assume even a weak positive would mean we would have to be gluten-free, so would any of you just not do the biopsy or should we anyway?

Smunkeemom - If your daughter ends up having Type 1, feel free to talk to me about anything you need help with. My son's been a Diabetic since he was 3.

I would go ahead and do the biopsy to be sure, it's not too bad really. Could actually be less bad for your son since he is used to needles, and the IV is really the worst part of it.

If his biopsy is negative, you might try him gluten free and see if he feels better anyway, it's not too bad, and I would assume that most of the stuff has been cut out already (since carbs are restricted for diabetes patients and bread and stuff has carbs)

He may be having other symptoms that most people don't associate with celiac disease like difficulty concentrating, trouble sleeping, tiredness, irritability, muscle and joint pain, headaches, depression, anxiety, ect. Gluten free may make him feel better than he has in a long time. I hope everything works out, and I will PM you if she tests pos. I may need a friend in the same boat LOL.

  • 2 months later...
Den Newbie
Den
Posted

Our gastro doctor told us that you either have it or you don't. There's no little bit. They probably hit an area that hadn't been infected to much yet.

Guest nini
Guest nini
Posted

personally, I would not do the biopsy. A weak positive is still a positive and just could be early stages. I would go ahead and put him on the gluten-free diet and not look back. Neither my daughter or myself had the biopsy, I've heard too much info about the biopsy missing damage because they are ONLY looking for the most advanced stages of the disease. So since you have a positive blood result, in my opinion there is no need for the biopsy. I have heard from several experts in the field that the biopsy is no longer the gold standard of dx, and that if you have a positive blood test there is no reason to do the biopsy. Also, if there are symptoms, positive dietary response is the best indicator of all. There is such a strong link between diabetes and celiac that it just makes sense to keep him gluten-free regardless.

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Nancym Enthusiast
Nancym
Posted
So basically, a weak positive just means it may be the early signs right? He always tells me his bones hurt and I just figured it was growing pains. Either way, I assume even a weak positive would mean we would have to be gluten-free, so would any of you just not do the biopsy or should we anyway?

Hopefully it is just the gluten causing his bones to hurt but if you put him on a gluten-free diet and they still hurt, mention it to your Pediatrician and have him checked for ankylosing spondylitis. It causes joints to fuse, starts in the spine. Boys get it worse and more often than females. It is good to get an early diagnosis so you can start treatment before the fusing starts. A lot of AS sufferers had bone pain as children and they now think it is related. Don't be put off with the diagnosis of "growing pains".

Laura--G Rookie
Laura--G
Posted
  • Author

Wow, didn't expect this to get revived :) We did the biopsy on March 3rd. The results came back definitely positive so now we know. If I could go back I wouldn't have done the biopsy. It was a lot of stress on him to not be able to eat and he was very anxious about the whole procedure. Also, his blood sugar dropped right before going in so he was extra upset. We are working this all out though and he's getting used to eating gluten free. Thanks for all the help.

Guest nini
Guest nini
Posted
Wow, didn't expect this to get revived :) We did the biopsy on March 3rd. The results came back definitely positive so now we know. If I could go back I wouldn't have done the biopsy. It was a lot of stress on him to not be able to eat and he was very anxious about the whole procedure. Also, his blood sugar dropped right before going in so he was extra upset. We are working this all out though and he's getting used to eating gluten free. Thanks for all the help.

now when you run across other people questioning whether or not to do the biopsy, you can tell your story and maybe prevent someone else from having to experience that trauma...

glad to know he is getting used to eating gluten free, hopefully he will just keep getting better and better! best wishes

key Contributor
key
Posted

I had borderline blood tests and I had been gluten free for 2 months already, which affected the test. I didn't have the biopsy, because I was already feeling better gluten free. I did test myself and gluten made me very sick. SO I don't eat it at all anymore. My doctor did say that the number for mine that was showing celiac was the one that showed intestinal damage. It would only be elevated if there was some kind of damage.

I too had bone pain before going gluten free. This was miserable and made me very fatigued. I also had alot of bruising, some nausea, bloating and gas, heartburn, diarhea alternating with Constipation. Anyway, there are alot of different symptoms. It definitely sounds like your son has it.

Bone pain is definitely a symptom of celiac.

Monica

tarnalberry Community Regular
tarnalberry
Posted
My son is 8 and is a Type 1 Diabetic. His doctor is screening all her Diabetic patients for Celiac. His first round of tests came back borderline so she ordered other tests to see if anything could be causing that and got a weak positive for Celiac. What does that mean? Don't you either have it or not have it? Now I have to take my child in for a biopsy. If the positive is that weak, isn't there a chance the biopsy won't show any damage?

A weak positive just means that there isn't enough damage to have a large amount of antibodies being released into the blood stream. She's still got it. For instance, you can 'appear' a little bit pregnant if you don't have a lot of symptoms and never show a lot, but you're still definitely pregnant.

My son is 8 and is a Type 1 Diabetic. His doctor is screening all her Diabetic patients for Celiac. His first round of tests came back borderline so she ordered other tests to see if anything could be causing that and got a weak positive for Celiac. What does that mean? Don't you either have it or not have it? Now I have to take my child in for a biopsy. If the positive is that weak, isn't there a chance the biopsy won't show any damage?

A weak positive just means that there isn't enough damage to have a large amount of antibodies being released into the blood stream. She's still got it. For instance, you can 'appear' a little bit pregnant if you don't have a lot of symptoms and never show a lot, but you're still definitely pregnant.

Guest Robbin
Guest Robbin
Posted

You are very fortunate to have found this out now. My son, 21, has type I since age 9 and they didn't screen for celiac then. It has been an uphill battle to get him to listen to me about this. He is very stubborn and doesn't want to deal with any drs. regarding this and refuses to talk to me when I bring the subject up. I have read that there are studies that have helped recently- dx'd type I diabetic children who have celiac -to reverse the diabetes, IF caught early enough that they still have islet cells left. My son had a long "honeymoon" period of very good blood sugar readings after initial dx and getting the blood sugars in control. This would have been the perfect time to get the diabetes in check. I am not sure where I saw the studies were being done but if someone could get in on the trials it would be soooo worth a try. I saw information on the internet somewhere. I hope this can help someone. :)

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      I wasn't given any blood tests. I think I should try the gluten free diet because when I cut it out a few weeks ago for just a couple of days, I know I started feeling better. The difference was actually pretty dramatic. When I learned gluten free eating may cause false negative biopsy results, I went back to gluten full force and feel like you know what × 10. Do you feel it would be okay since the gold standard for diagnosis is behind me or should I wait for biopsy results? In your opinion, of course. I know you can't offer me medical advice.
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