Need Some Help

[momandgirls]

I just found this board and have been snooping around and reading posts for about a week now. My daughter's 11 and has had chronic stomach aches since infancy. No doctor has ever had an explanation. Finally, we saw a pediatric GI and she's been through the wringer with tests. First, they found that she is severely lactose intolerant and, even with cutting out dairy completely, she still gets stomach aches. Her antibody test - sorry if I get the names of things wrong - was positive - I think her result was 27. She had a biopsy and it was "borderline." In other words, they didn't find flattening but she did have other things consistent with Celiac - i.e., leukocytes, etc. She then had the CeliaGene test and that was positive, also. But, because there was no flattening, the doctor doesn't seem to want to make the leap to say she definitively has Celiac. So, at this point, until I speak with the doctor next week (hopefully), there's still no plan. The anxiety around our house has been overwhelming. As silly as it sounds, she'd almost feel better if she just knew she had Celiac - at least there'd be a reason for the stomach aches. Does that make sense? So, my question for all of you experts out there is, what would you do in my situation? Many people in the family have various GI ailments though no one else has been diagnosed with Celiac because no doctor has ever suggested it. My gut feeling tells me to just go on the diet and see if she feels better. The GI nurse's feeling is that she should stay on wheat and every month or so test her antibody level. On the one hand, I know that it's difficult and there are inherent risks in going gluten free but, on the other hand, there are risks in not going gluten free if that's what you have and I really hate to see my daughter suffer. So, any advice? Thank you so much. You have no idea how much I appreciate it. PS - sorry this so long.

[Rachel--24]

  momandgirls said:

My gut feeling tells me to just go on the diet and see if she feels better. .

My advice is to trust your instincts. The bloodtest was positive, the endoscopy borderline, gene test also positive..and she is symptomatic. I definately would start her on the diet if I were in your shoes. For some reason doctors are very reluctant to dx Celiac unless they see flattened villi. If you wait for that to show up your daughter will be in much worse shape than what shes in now (assuming she has Celiac).

There are no risks in putting her on the diet...its perfectly healthy and in no way will it cause her harm. If she improves from her symptoms you will have all the answers you need. You dont need a doctors permission to put her on the diet.

P.S. I moved your topic to the Parents of kids with Celiac forum so that other parents in similar situation can share their experience.

[jerseyangel]

Hi--I agree with Rachel. If I were my child, (I have 2 sons) in this situation I would start the gluten-free diet now. Make sure she's 100% gluten-free, and give it some time. I would be willing to bet that she will be feeling much better before long. It's easy for a nurse to say--wait and keep testing--when it's not her child. The diet challenge is a valid way of diagnosing--there are others here that were diagnosed that way.

[key]

My son's test results were inconclusive, but his change in behavior and bowel movements, etc. were such a wonderful change after going gluten free, made it quite obvious that he has celiac disease. It doesn't hurt at all to do the diet and if her stomach aches go away, I am sure everyone will be thrilled. It sounds like to me she did test positive for celiac and some other docs would have called it that.

Stick around here and find out what you need to learn. Believe me, seeing your child pain free is well worth the effort.

MOnica

[Guest nini]

my daughter's results were inconclusive (well, the Dr. didn't do the correct tests) and they told me that despite a genetic predisposition (me having Celiac) that she just had IBS and I needed to feed her MORE whole wheat.

that did not sit well with me. I started her on the diet and almost IMMEDIATELY had my answer. Within DAYS I had a completely different child. She was 3 at the time. She is now almost 6 and is so healthy and gluten free. If she gets the slightest amount of gluten, she reacts violently. I know my child has Celiac, I have it, and we will NEVER willingly consume anything with gluten again.

I stated on another thread in response to your post that there is no "borderline" biopsy. Either she has it or she doesn't. For some bizarre reason Dr.s are reluctant to dx the early stages of Celiac. They would rather wait until there is significant damage to the villi and the Central Nervous System and the entire immune system before they will dx Celiac. Personally I would rather stop it in it's tracks before the damage gets worse. Her bloodwork was positive, my dear, she has Celiac. Start her on the gluten free diet IMMEDIATELY and DO NOT LOOK BACK.

[Nic]

  momandgirls said:

I just found this board and have been snooping around and reading posts for about a week now. My daughter's 11 and has had chronic stomach aches since infancy. No doctor has ever had an explanation. Finally, we saw a pediatric GI and she's been through the wringer with tests. First, they found that she is severely lactose intolerant and, even with cutting out dairy completely, she still gets stomach aches. Her antibody test - sorry if I get the names of things wrong - was positive - I think her result was 27. She had a biopsy and it was "borderline." In other words, they didn't find flattening but she did have other things consistent with Celiac - i.e., leukocytes, etc. She then had the CeliaGene test and that was positive, also. But, because there was no flattening, the doctor doesn't seem to want to make the leap to say she definitively has Celiac. So, at this point, until I speak with the doctor next week (hopefully), there's still no plan. The anxiety around our house has been overwhelming. As silly as it sounds, she'd almost feel better if she just knew she had Celiac - at least there'd be a reason for the stomach aches. Does that make sense? So, my question for all of you experts out there is, what would you do in my situation? Many people in the family have various GI ailments though no one else has been diagnosed with Celiac because no doctor has ever suggested it. My gut feeling tells me to just go on the diet and see if she feels better. The GI nurse's feeling is that she should stay on wheat and every month or so test her antibody level. On the one hand, I know that it's difficult and there are inherent risks in going gluten free but, on the other hand, there are risks in not going gluten free if that's what you have and I really hate to see my daughter suffer. So, any advice? Thank you so much. You have no idea how much I appreciate it. PS - sorry this so long.

My son had a similar situation. A year ago he began suffering with severe constipation. The doctor began running many tests. His antibody level for gluten sensitivity was so high it was through the roof. The doctor had never seen such high levels. He felt certain it was celiac. The biopsy though came back negative because there was no flattening. My doctor, who is wonderful, did want to just let this go. He started calling around to other doctors who all agreed that they have never seen a negative biopsy with antibodies being so high. they ended up sending his biopsy to Columbia University. They are the experts in Celiac. They gave him a positive diagnosis even without the flattened villi. He has been gluten free since May and doing much better.

[Electra375]

I have to go with give the gluten-free diet a try and see how she feels, give it at least 3 months for a full effect. At least she is old enough to tell you.

Note my siggy line, my ds2 does not have a biospy, but has all the other necessary test for celiac disease plus classic symptoms. A renouned GI doc involved in research asked me if I had any doubts about it being celiac disease. I said no. He said he agreed with me although w/o the biospy he could not say for sure.

My son was already gluten-free at this point and the evidence was overwhelming that gluten-free was right for him as far as growth goes. He has gained nearly 3" in height since Sept and a few pounds. Eating is hard for him b/c he associates it w pain. We have him on and off a medication for that, which helps when we remember.

It is taking every bit of strength in me not to put my others on a gluten-free diet before testing. The information to go gluten-free from the pediatrician prior to seeing the Pedi GI is what really screwed us up w/ our ds2 dx. We were not about to put him on a high gluten diet to 'see' if he had damage after seeing such positive results going gluten-free.