Need Recovery Help Please.

[millersinkenya 0]

Hi! I am new here and I am just looking for some opinions. My son has had some major health issues for the last couple of years (he is now 3.5 years old). With out going into a lot of detail, I was wondering if anyone could look at his pathology reports from almost two years ago. We were told he did not have celiac but I am thinking that the GI doctor who told us that may be wrong. He is still having a lot of issues now and has started to get migraines for the last year. They have ruled anything out contributing to migraines and medicine is not working. He is having about 2 per week at this point. I read that celiac can contribute to migraines, so here I am! I asked the GI doctor to forward me his reports (his biopsies were read by two different pathologists) and I was shocked when on both of them, the path suggests celiac. I think he had blood work done but it was negative. He was 1y11m at the time of all of this. Does anyone know how to read pathology reports? I am including the final pages from both pathologists.

The kicker to all of this is that we live in Africa and there are no doctors here who know what celiac disease is to go and talk to about everything. I am starting him on a gluten-free diet now in hopes of helping, but I am just not really sure what the reports mean!

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[Twinklestars 19]

I am relatively new to all this, but the report clearly states there is some blunting of villi and also says his results are suggestive of celiac disease. I would think it would make sense given his age, that his villi are not going to be dramatically damaged at this stage. But the fact there is some damage there suggests a positive celiac diagnosis and he should most definitely be on a gluten free diet.

Please someone with more experience correct me if I'm wrong?

[ravenwoodglass 1,348]

Welcome to the forum. His pathology reports are consistent with celiac disease. False negatives on both blood and biopsy are not uncommon but false positives are not. When the one or the other is positive a person does have celiac. All his first degree relatives, Mom, Dad and siblings should now also be screened even if they don't seem to have the same or any symptoms. You are in a good place to learn how to do the gluten free lifestyle so ask any questions you need to and read as much as you can here.

[kareng 2,144]

Send a brief note like what you wrote above and the attachments. The email address is on the website:

http://www.celiacdisease.net/contact-us

Maybe hearing it from a doctor who knows about Celiac will help your doctors.

[Roda 186]

I'm sorry that you have been going through a hard time with your little one. As Raven said his pathology reports are consistent with early changes associated with celiac. In the absence of other illness, then your doctor should have given the diagnosis of celiac and saved your poor child a few years of misery. You did the right thing by requesting his reoprts. Since you have had this happen I would, everytime he has any blood work or procedures, get written copies of everything. Now is as good a time as any to start him gluten free. All first degree relatives should be screened also ie, mom, dad, siblings.

[millersinkenya 0]

That is what I was thinking. The thing that kind of makes me a bit mad is the fact that this is from a year and a half ago. He may have only had minimal blunting then, but what damage have a done to him since then because of doctor error (if there is error)? I am just so frustrated about this. And, we have just moved to Africa for my husband's work- had we known this, we may not have moved because there are no doctors here at all that know what celiac is or how to deal with it clinically, along with the other associated issues with celiac.

Any other opinions? Thank you so much for your input, this forum has been a great resource for me from here!

[millersinkenya 0]

Thank you so much, everyone. I was afraid that this what you guys would say as well. I am just so completely unsure of why the ball got dropped by the doctors. I will send an email to the UofC address to see what they can say. I just don't know what to do from here as far as health care is concerned. We can do a gluten free diet, but here the labels are not very accurate on foods, etc., and it is just going to be hard (and very expensive). I called the hospitals here and no one could connect me with a doctor. Wish I could have a doctor trained here on celiac!

Thanks again

[ravenwoodglass 1,348]

Thank you so much, everyone. I was afraid that this what you guys would say as well. I am just so completely unsure of why the ball got dropped by the doctors. I will send an email to the UofC address to see what they can say. I just don't know what to do from here as far as health care is concerned. We can do a gluten free diet, but here the labels are not very accurate on foods, etc., and it is just going to be hard (and very expensive). I called the hospitals here and no one could connect me with a doctor. Wish I could have a doctor trained here on celiac!

Thanks again

Go with as much whole unprocessed food as you can. That is cheaper and safer than looking for gluten free specialty foods. Meats, chicken, veggies, fruits, beans, rice etc are all gluten free in their natural form. Since the gluten free diet is the only treatment for celiac at least you didn't discover he needed something that required meds that you might not be able to access.

[JoshB 1]

That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point where he would start showing normal signs. However, at the age of four it's much more likely that he would test normally.

In light of that I would suggest:

#1 -- Redo the blood test, before starting a gluten free diet. If at all possible make sure they use "deamidated gliadin peptide", which is supposedly more effective with young children.

#2 -- If the test is positive, be glad you know what it is and start the gluten free diet.

#3 -- If the test is negative, start gluten free anyway -- he may still be too young for the blood test. Now you'll have to evaluate effectiveness for yourself.

[millersinkenya 0]

That's certainly suggestive of celiac disease. Unfortunately with only level 1 marsh changes it's not even close to diagnostic, and I think your location may raise the likely-hood of other the other potential problems. At the age of one I don't think that a blood test would be likely to be effective; his immune system wouldn't have developed to the point where he would start showing normal signs. However, at the age of four it's much more likely that he would test normally.

In light of that I would suggest:

#1 -- Redo the blood test, before starting a gluten free diet. If at all possible make sure they use "deamidated gliadin peptide", which is supposedly more effective with young children.

#2 -- If the test is positive, be glad you know what it is and start the gluten free diet.

#3 -- If the test is negative, start gluten free anyway -- he may still be too young for the blood test. Now you'll have to evaluate effectiveness for yourself.

Thanks! we just moved here 2 months ago, so being in Africa would have no effect on the past test results. We lived in Colorado at the time. What do you mean that it is not even close to diagnostic? I am new to this, so I do not know, but wouldn't any villi blunting be indicative of gluten issues? The main issue with being here is that the doctors do not know what it is or how to test for it. The only lab that knew what I was talking about said that they would have to see about the tests and would have to send them overseas. Not sure we can afford that right now! What would be considered diagnostic as far as the biposies are concerned? Can a path tell a difference between gluten sensitivity and celiac?

[Roda 186]

I have to disagree with Josh B (sorry Josh, not picking on you at all). He is right in the fact that the blood work is more unreliable in children giving more false negatives. I'm not sure how much more suggestive your report needs to be except with total villi blunting. And I aggree with you if indeed it is celiac from 1.5 years ago, the damage may very well have progressed. If it was me I wouldn't hesitate to go gluten free based on the previous path report. He does raise a good point, if you can, get him bood tested again before he goes gluten free.

[millersinkenya 0]

Thanks all!

[millersinkenya 0]

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

[Roda 186]

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

Glad you got such a quick response.

[ravenwoodglass 1,348]

UPDATE:

The GI doctor has written back to me and stated that it does show that he should be diagnosed with Celiac Disease. They are sending me information on Monday. I guess we are officially gluten-free around here.

That's great news. Glad it got straighted out and hope things are going well soon.

[Twinklestars 19]

That's great they got back to you so quickly! Welcome to the world of gluten free