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Newly Diagnosed ( I Think?) 4 Year Old..... Confused Mama

Jodie8

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Jodie8 Newbie
Jodie8
Posted

Hi! I am looking for information please:) My son Leo is 4 1/2 and has always been a very intense little fellow. He is allergic (non-IgE mediated) to dairy and soy which we found out about when he was 6 weeks old and would poop out blood when I consumed those allergens. He had horrible, horrible colic and was a very "high needs" baby and was a clingy, grumpy toddler. When he was about 2 I removed gluten from his diet as I suspected that something else was bothering him. There was no change in his behaviour so I reintroduced wheat after a few weeks.

Leo has always had dark circles under his eyes, and when tested his iron was always ok-but his ferritin was always low, especially considering the fact that I give him floradix almost every day. A couple of weeks ago his skin started looking yellow to me, not jaundiced, but sallow. I asked my husband what he thought and he didn't agree. A few days later my husband agreed that Leo did look yellow. We took him to the pediatrician that day, and I asked for bloodwork to be done. the pediatrician said that Leo looked fine, but agreed to the bloodwork. I asked for celiac testing and the ped denied it because Leo is so healthy and at the 95th percentile for height and weight. I explained that I really wanted it done-that Leo's poop was always loose (not diarrhea though), and the ped finally agreed. A few days later a nurse called from the ped's office. She told me that my son's tTG level was 633. 633!!! She used to work at the celiac clinic and she said this value was extremely high and that he most definitely has celiac disease, and the would book a GI consult for a scope. ALl of his other bloodwork (iron, ferratin, B12 etc came back normal).

I have decided to not get the scope done and I have removed all gluten from his diet (three days ago we started). He has tantrumed more in the past 3 days than he has in 6 months!! Is withdrawal possible??? Also, has anyone heard of such a high tTG value?? It concerns me that the number is so high, but that he hasn't been really symptomatic. Is that bizarre???

Also, what is the likelihood that my husband, my daughter and myself are affected????

Thank you SO much:)

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Mom-of-Two Contributor
Mom-of-Two
Posted

Yes! At least as an adult, I am having some mood changes making the gluten transition (about a week now). I believe it is common. Gluten can have an addictive like quality on your system, so it is natrual to have it seem worse before it gets better once going gluten free.

Did your son have the full celiac panel? Was he positive on the endomysial antibody test? I agree, my children are being tested next month via celiac panel, and if either of them are positive, we will not scope them at their young ages, just do gluten free as a family. If they are negative, we will retest as often as suggested by the pediatric GI-- they do not have symptoms.

Just be sure he had the full panel, and get a copy of all results.

Mdhriggin Newbie
Mdhriggin
Posted

My daughter's was not that high when she was diagnosed at 21 months, but it was up there. It was through the classical presentation of celiac disease in my daughter that we realized it was present in my husband's family line. Once she was diagnosed he went through the testing and found out he also has celiac disease. One thing to think about (if you live in the United States) is that celiac disease is a disqualifier for military service, including the draft. However, without the scope the diagnosis is not "official". It was difficult to have my toddler to go through the procedure, but with a positive confirmation, then you never have to purposely introduce gluten into his diet ever again to get that "confirmation" when he gets older. And, given how my daughter and husband both react when they accidently get glutened, I would bet his sensitivity to gluten will only get worse as he gets older without gluten in his system.

Jodie8 Newbie
Jodie8
Posted
  • Author

Yes! At least as an adult, I am having some mood changes making the gluten transition (about a week now). I believe it is common. Gluten can have an addictive like quality on your system, so it is natrual to have it seem worse before it gets better once going gluten free.

Did your son have the full celiac panel? Was he positive on the endomysial antibody test? I agree, my children are being tested next month via celiac panel, and if either of them are positive, we will not scope them at their young ages, just do gluten free as a family. If they are negative, we will retest as often as suggested by the pediatric GI-- they do not have symptoms.

Just be sure he had the full panel, and get a copy of all results.

Thank you for the reply and for clarifying that gluten withdrawals can happen!! He only had the ttg test done ( I think). The nurse said his level was so high that he most definitely did have the disease.

Jodie8 Newbie
Jodie8
Posted
  • Author

Thank you :) Yes, I think it would be reassuring to get that positive biopsy. We live in Canada, and would get a tax break on gluten-free foods if we were to do it, but I just can't bear. I also don't know how long from now it would be booked for and I don't want to keep feeding him gluten-especially because his tTg is SO high.

My daughter's was not that high when she was diagnosed at 21 months, but it was up there. It was through the classical presentation of celiac disease in my daughter that we realized it was present in my husband's family line. Once she was diagnosed he went through the testing and found out he also has celiac disease. One thing to think about (if you live in the United States) is that celiac disease is a disqualifier for military service, including the draft. However, without the scope the diagnosis is not "official". It was difficult to have my toddler to go through the procedure, but with a positive confirmation, then you never have to purposely introduce gluten into his diet ever again to get that "confirmation" when he gets older. And, given how my daughter and husband both react when they accidently get glutened, I would bet his sensitivity to gluten will only get worse as he gets older without gluten in his system.

maramelia Newbie
maramelia
Posted

Thank you :) Yes, I think it would be reassuring to get that positive biopsy. We live in Canada, and would get a tax break on gluten-free foods if we were to do it, but I just can't bear. I also don't know how long from now it would be booked for and I don't want to keep feeding him gluten-especially because his tTg is SO high.

the best thing to do is to mantain the gluten diet, at lest to do the rest of celiac panel - antiendomisio, bowel biopsy, and probable repeat the TTg...

then, you may start the gluten free diet. take the gluten out now will be bad, because the biopsy may come negative...

u need to understand, wait just more few days, till your son have done the biopsy...

researchmomma Contributor
researchmomma
Posted

There are two big reasons that I would want that biopsy for a child with his history:

1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac diagnosis. Can you get a copy of the test and share it with us?

2) If he has the Celiac diagnosis, it is covered under the ADA in America and in the EU you get free gluten-free food. So when he goes to school in the US (if that is where you live), they will make gluten-free lunches for him and in college as well.

I would want to know that Celiac was causing that number. What if it isn't?

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Skylark Collaborator
Skylark
Posted

There are two big reasons that I would want that biopsy for a child with his history:

1) You want that scope to rule out other autoimmune disorders like Crohn's and Ulcerative Colitis. Left untreated, this can be devastating. That high tTg could be from other diseases, not just Celiac. If you had other tests, maybe you could get that positive Celiac diagnosis. Can you get a copy of the test and share it with us?

2) If he has the Celiac diagnosis, it is covered under the ADA in America and in the EU you get free gluten-free food. So when he goes to school in the US (if that is where you live), they will make gluten-free lunches for him and in college as well.

I would want to know that Celiac was causing that number. What if it isn't?

I pretty much said the same in Jodie's other thread. I completely agree he needs at least a full celiac panel.

Cara in Boston Enthusiast
Cara in Boston
Posted

I was very concerned about my 5 year old having a biopsy because it sounded so invasive and kind of a big deal. He had never even been in a hospital (other than when he was born) and I tend to worry about everything. It turns out it was REALLY no big deal. He actually had a great day - they made it fun and relaxing (for him - not so much for me!). My older son (9) had one too and he too had a great day. They were both up and about within 30 minutes and full of energy and normal.

I had one too, and hardly even remember it. I wish I had gone first because it would have put me at ease.

I totally understand about you not wanting to wait to complete testing. My son's testing took almost 4 months and he clearly felt horrible the whole time. I felt like a terrible mother continuing to give him food that I knew was not good for him.

But, now we have a clear diagnosis. With the biopsy results, we have a starting point to compare to future procedures (if needed) to monitor his healing. With a clear diagnosis, we have a doctor's note that will protect my son in school, summer camp, college, etc. Without it, there is no guarantee that other's will comply.

The diet is for LIFE. You want to be as certain as possible that you get it right. Do it NOW before she has been gluten-free for a long time. My son has gotten more sensitive the longer he has been gluten-free. If we had to test him now, and feed him gluten for 3 months, it would be much, much worse than it was in the beginning.

Book the endoscopy and take the extra time trying out some new gluten-free foods so that when you are done with testing, you can just transition smoothly to a gluten-free diet rather than go cold turkey.

Everyone in the family should be tested as well. I tested positive, the other two family members negative. We now have a gluten-free house and everyone is feeling great. It was worth the wait.

Cara

researchmomma Contributor
researchmomma
Posted

I pretty much said the same in Jodie's other thread. I completely agree he needs at least a full celiac panel.

Ahhhh thanks

Jodie8 Newbie
Jodie8
Posted
  • Author

Thank you all so much for the advice. I appreciate it very, very much! When we received the call 6 days ago, I immediately put my son on a gluten-free diet-which was so easy!! He already has food restrictions (soy and dairy allergy), and we eat mostly whole foods, although the other day though he said he missed his brown bread (kamut) and his O's:( My son has had "normal" poops every day for the past 4 days.

Anyhow, my belief in the gut-brain connection has been affirmed!!!!

Although he has been reading for a few months, he has no interest in writing and only writes his name. Today I was writing a shopping list and I gave him some paper and asked him to write what he would like, and I expected scribbles. He returned the paper to me with "TOYS" written very legibly. It was amazing! I have decided NOT to do the biopsy-I have found research studies indicating that a very high level of tTG almost always corresponds with a positive biopsy result. Considering the dramatic change in his energy levels, poops, and writing, I will not be putting him on gluten. We have a great working relationship with our ped and I am sure that she will help us if we ever need a written diagnosis. Anyhow, thank you all so much!!!!

Skylark Collaborator
Skylark
Posted

That's great! I'm so glad to hear of his dramatic improvement! B)

researchmomma Contributor
researchmomma
Posted

Yeah! That is great. There are lots of recipes for gluten-free brown bread! Google it. My fav is from www.glutenfreeonashoestring.com

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