AGH2010

I'm in Santa Monica and have similarly had no luck finding a support group for my 2 year old who is celiac. I was hoping for a playgroup so she wouldnt feel like the only celiac kid out there. I emailed the Celiac Foundation and was told they'd forward my contact but still haven't heard anything. I'm surprised our area has so few groups when other areas (like NorCal where I used to live) have so many!

My skin was thin as toilet paper and my spine as firm as a wet gluten-y noodle. It will happen naturally. You can still be nice and kind yet firm enough to get your point across without the need to justify.

Ha! Love it. I will keep the image in mind to give me strength when I'm ordering.

Thank you so much for all your responses. I'm wondering now if we might find other problems like you did through the endoscopy... Agh, I'm driving myself crazy trying to decide. But I think we will most likely skip it. I just hope our GI is willing to continue to see us even if we skip it.

Thank you, all, for your helpful responses. I'm sure I'll get a thicker skin soon enough.

Hi everyone,

I'm still struggling with whether to follow my gut and skip the endoscopy since my 2 year old daughter has tested positive on the EMA test. We're meeting with our original GI tomorrow (have been through 3 of them) and I know she'll push for the endoscopy. My husband and I want her to repeat the EMA just in case the first test was a false positive. But if it's positive again (or even if it's not), we're planning on going gluten-free anyway because she has so many of the other symptoms.

My only fear is that we will regret our decision not to do the endoscopy down the line to the extent no doctor will be diagnose her as celiac without the endoscopy. Has anyone face anything that's made not having an official diagnosis difficult?

(I know we can always do a gluten challenge but I don't like the idea of forcing damage on her at any point in her life).

Thanks!

Hi everyone!

I was wondering if those of you with experience might be willing to share whatever little canned speech you give before ordering at restaurants. I've read about people using restaurant cards but can't figure out how you'd use one without it being awkward.

I'm a fairly shy person generally and would appreciate any advice on the practicalities of asking servers/managers to avoid cc. Also, I heard second-hand that you can ask for restaurants to grill meat on a piece of aluminum. Has anyone else requested that?

I don't have celiac myself (that I know of, will be tested soon) but my 2 year old has been diagnosed so I'm going to have to learn for her sake. I plan on making her food at home for the most part but am asking fit the occasional restaurant visit.

Thanks in advance!

Thank you do much for posting!! I'm struggling with whether to go ahead with an endoscopy for my 2 year old or to just go gluten-free and skip the test. Her blood work came back positive for celiac and showed high inflammation. I've taken her to 3 GIs who say I have to do the endo but warn me that the damage may be patchy so it may come back negative.

The description of your girl pre-gluten-free is similar to mine, ESP the bloated belly despite being tiny everywhere else, the sweating in her sleep and the allergy look on her face. I really hope hers is related to gluten too!! She's had bags under her eyes since she was an infant.

The only things the doctors say to refute their stance is that a gluten-free diet for the rest of her life is an extreme measure and I owe it to her to have her tested via biopsy. But like you, even if it comes back negative I'm going to eliminate her gluten to see how it helps.

So happy to hear about your daughter's changes for the better. Thanks again for sharing.

Thanks, everyone, especially for confirmation of what I suspected -- that celiac could very well be causing the high ESR.

I'm definitely not going back to yesterday's GI. It was very clear that he had a poor understanding of celiac. Just shocking to me that a relatively young GI at a teaching hospital who is very involved in research of GI diseases generally would be so ignorant about celiac.

Since my daughter is only 2, I really would like to skip the endoscopy if possible and just put her on a gluten-free diet and see if it brings down the inflammation and gets her to a negative EMA. But every doctor gives me the speech about the endoscopy being the gold standard and how it would be cruel to have my daughter be gluten-free without confirmation via biopsy. But in the same breath they point out that there is a good chance her biopsies would come back negative because she's so young and unlikely to have much damage. Her growth is fine.

I think I'm going to take her to the pediatric celiac clinic in San Diego next (we live in Los Angeles). I would love to be seen by someone knowledgeable. Never thought I'd be running around to so many doctors for something not that unique or obscure.

I do hope yesterday's doctor will think twice before dismissing the possibility that someone with just constipation could have celiac,

Did she have the test for ttg? I would insist on that.

Yes, she had ttg tested as well. Her #s fell under the cut-off for it being positive but I'm told that's not too surprising given how young she is.

The GI we saw yesterday is an expert in IBD. When I asked him if the inflammation could be caused by IBD, he said it's very rare at her age and that she would be presenting with a lot more symptoms, not just constipation.

I don't know anything about EoEs so didn't know to ask.

Ugh, I completely agree with you!!! We still don't have a firm diagnosis for my 2 year old but her EMA test came back positive and all signs points to celiac so I think it's only a matter of time before we embark on the difficult gluten-free road. I've been pretty disappointed by most people's reactions, especially my mom friends who also have 2 year olds. They should realize how hard it will be to keep a 2 year old from eating goldfish crackers and cake when all her friends are eating those things at school and parties! But I too have gotten the speech about how good she has it these days. I start explaining cross-contamination and get blank stares back. I feel like people think I'm exaggerating. You're so right that just a little bit of empathy would go a long way. You've got my empathy and my prayers too!

Hi everyone,

Today I took my daughter to her 3rd GI in 2 months (for various reasons, such as insurance, we've had to look around). Her first GI did a celiac panel and a bunch of other blood tests when she found out my 2 year old has been constipated her whole life. Her EMA test came back positive and she also had a very high ESR (aka sed rate) so she has some sort of inflammation going on in her body. I have read that celiacs can have very high inflammation rates.

Well, today's doctor started out by saying he was very surprised the first doctor had ordered a celiac panel for just constipation and said he would not have - even though my daughter's came out positive! He also said he didn't think the inflammation had any correlation with celiac.

I'm not sure I trust this particular GI's knowledge of celiac and am tempted to return to my first one even though she is out of network and will cost us a fortune. But even the first GI said she did not think celiac could explain my daughter's sed rate.

I thought I might be able to find out more by asking you all to see if anyone's child also had a high rate of inflammation before they were diagnosed with celiac. (For anyone with actual #s, my daughter's ESR was 28 during the first blood test and 31 at her second blood).

Thank you!!!

I have the same exact fear! Every time my 2 year old asks for water, I start worrying that it could be the thirsty symptom of diabetes. I'll be so grateful if she only ends up dealing with celiac in her life.

Thank you to all of you who have responded to my original post! After reading some of your posts, I realized that there was the chance that I'd be separated from my daughter before she was sedated. My first GI had assured me that I'd get to stay with her so I didn't even think to ask the second GI, who was going to be performing the endoscopy. When I called to confirm that I'd get to stay with her, I was told that I wouldn't be so I decided to seek out yet another GI. She's in such a sensitive stage right now in terms of separation anxiety that I just couldn't bring myself to hand her off to some strangers in a hospital. We're seeing our new GI next week. He's part of the UCLA group and the receptionist there assured me that I'd get to stay with her until she was sedated. My friend's son also had surgery at UCLA recently and told me she got to hold him until he was out.

So that's where we are at... Hoping I like the new GI. I wasn't a fan of the old one anyway so it was probably meant to be (especially because I found out last minute that our insurance would not cover pathology at the previous hospital but will cover it at UCLA).

Thanks for the words of encouragement, everybody!

Oh wow, I didn't realize it would be an ongoing process with more scopes in her future. I'm mainly concerned with how she will handle the anesthesia. Hopefully they won't push us out too quickly. How long does the process usually last for you from the time you guys arrive until the time you leave? (I know it's probable different for everyone). Unfortunately I wasn't able to find anyone within our insurance network who could do it at Children's but it will be done at a good hospital. Our GI assured us that the anesthesiologist was good.

Thanks for the tip about popsicles!

Thanks for your words of encouragement. I should be grateful that they caught it so early. But still feels overwhelming - and we havent even gone gluten-free yet! Hope your daughter is doing well!

Hi everyone,

I'm so relieved to have found this forum and to not feel so alone as I grapple with what seems to be an almost certain diagnosis of celiac for my 2 year daughter. She tested positive on her blood test and has a high sed rate (inflammation). The only symptom I took her to the GI for was chronic constipation, which my pediatrician kept assuring me was very typical in toddlers. So I never expected to be told that my little one might have something serious like celiac.

Anyway, at this point, I can't wait for her to go gluten-free to see if it helps with her constipation and inflammation. But we still need to get over the hurdle of the endoscopy. And I'm so scared of there being complications

I was hoping for any tips or words of encouragement from parents who have had their kids scoped. And also for any advice on how to explain to their toddlers that they can't everything their friends eat anymore. I find it especially challenging because she's never. Omplained of stomachaches so I can't make the connection for her.

I guess this is more of an introduction post than anything else because I expect to be visiting this board quite frequently in the future. So happy to have found this community!