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1337Mama

My 7 Year Old Might Have Celiac Disease

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Hi Everyone,

I'm pretty convinced my 7 year old daughter has Celiac Disease. Here's the back-story.

Went from 75% growth at 2 yrs old, and has been below 5% for 2 years - docs confirmed stunted growth. She's 7 years, 4 months old and still wears a size 5 jeans perfectly.

Slightly elevated thyroid levels (4.6 I think?) a couple months ago and we have our endocrinology appt coming up on the 12th.

However...

She's had stpmach cramps on and off for a couple years. Docs thought she was overeating, but didn't hear me when I said she's a slow non-eater. (she eats, just not a lot and verrry slowly, so she's not overeating) Then right around Christmas, her forehead started breaking out with what looked like a few small pimples. I thought maybe she just wasn't cleaning her face properly in the shower, but as of a few days ago, she now has a full on (non-red) rash all over her face, and it's now starting on her arms. Sometimes these itch, sometimes a couple of them "burn" a little.

I googled everything, and I'm pretty convinced it's celiac. I'm taking her to her regular doc on Monday to see if there are any antibody tests that can be done while we wait for the real tests, because I refuse to not have her on a diet now.

So, this is her second gluten-free day. HOLY COW is it expensive!! I've spent...thinking...$316 yesterday at Whole Foods and another like $150 today at a local supermarket after I realized I didn't come home with a lot of food! We so cannot afford this. I mean, food in the San Francisco Bay Area is expensive enough...

Any thoughts? I'm sure her docs at Stanford/Lucille Packard will be able to figure it out, but in the meantime, I'm kind of sick to my stomach about this. I read that we shouldn't start kids (anyone) on a gluten-free diet until they are diagnosed, as to not hide the symptoms, but now that I think about how the food I've been making her all of these years might have been hurting her, I can't imagine going back on a regular diet for even a day.

Thanks for listening. I'm glad I found this forum.

(^_^)/

Tammy

Edited to add pics. I know they don't show the rash well. It's really all over, tightly-packed and flesh-colored.

IMG_0853.jpg

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The gluten-free diet doesn't have to be expensive. Starting with fresh, whole foods is best for the healing process and better for the budget usually. Instead of finding substitutes for everything, we can learn to enjoy new things. Switch out carby snacks for fresh fruits-there are SO many packaged fruit based snacks available and SO many fruit based desserts that can be made homemade. Many gravitate more towards rice and potatoes rather than breads and pasta when they start their gluten-free journey.

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Something to consider when pursuing a formal DX is that if this is her problem, she will need to be committed to being gluten-free for life and at some point it will be her responsibility for what she eats. Some need a formal Dx in order to stick with it. Be sure that you are informed about the testing process before completely eliminating gluten from her diet in order to ensure an accurate DX and do your best to get one if you decide that it will be of benefit to her. There are antibody tests, biopsy of the small intestine and gene testing to name the most commonly used tests. Many of us don't have a formal DX but were so sick for so long and feel so much better, that's motivation enough. I would hate to see a child heal, feel great, grow up, not have a DX and not get terrible symptoms when eating gluten again and think why bother and go back to eating gluten and silently incur damage over the next few years. In fact, I've heard stories of adults who experienced just such a scenario. That's my opinion. You have to do what you think is right for your child. Hopefully other parents can share from their experiences.

BTW,

WELCOME. You've come to the right place. I hope you find it to be a great source of support. We will be here as you take your journey.

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Hi Tammy . . . welcome . . . you have found a wonderful resource.

You're primary doc can request the celiac panel. If you are seeing this doc on Monday, ask for a blood test and get it done on Monday. You really need to keep her on gluten until you are satisfied that you don't need any further testing. If your testing comes back negative (as it does sometimes) you can certainly try gluten free to see if it relieves any/all symptoms. My son's tests were negative but because he was so small (under the 5% curve) and because his sister was diagnosed with Celiac, we did a trial diet for 6 months because the pedGI recognized that the blood test isn't 100% (btw, made no difference for him).

When I first started out, I bought a lot more "gluten free" items than I do now. As you get used to the diet, you'll find a lot of mainstream products that are just fine. I use crushed corn chex when I need bread crumbs, I make my daughter's bread with a mix in the bread machine (much cheaper and better than buying the frozen loafs), and the gluten-free items that we go through quickly (Glutino crackers, bread mixes, Pamela's pancake mix, and Tinkyada spaghetti) I buy in bulk. You'll get lots of help and hints here to keep your food costs down.

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You're primary doc can request the celiac panel. If you are seeing this doc on Monday, ask for a blood test and get it done on Monday.

I'm just going to quote Laura from another thread instead of typing it all in . . . at a minimum, request the ones I highlighted in red (not all docs do the whole panel).

Tests in the Celiac can include:

tTG IgA

EMA IgA

AGA IgA

AGA IgG

total IgA

There is recent research and talk about running deamidated gluten antibodies (IgA and IgG) tests as well http://www.mayomedicallaboratories.com/tes.../Overview/89031

May also want to consider running the genetic markers, also.

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Thanks so much for all the advice and info! I guess I'll keep her on a regular diet until I hear further.

Thanks for the test info too. So much to go through and think about! I'm going to re-read everything and I'll post back after I get her test results. Thanks for everything!

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There are definitely ways to do the gluten-free diet inexpensively. Seriously, fresh meats, veggies, and rice are not expensive at all, and that is the bulk of my Celiac daughter's diet. There's a few other gluten-free specialty products we get that are staples in her diet, but I've managed to keep our grocery budget about the same it was before she was diagnosed. The key to the gluten-free diet and mainstream products is read, read, read, read, read the labels. It's more time consuming than expensive, IMO, and requires a bit of planning. You'll get to know the companies you can trust pretty quickly.

Def stay on the gluten until you can get her tested--but as you'll probably hear--tests aren't always reliable, so if it goes on for too long, it's always OK to do a gluten-free diet trial.

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There are definitely ways to do the gluten-free diet inexpensively. Seriously, fresh meats, veggies, and rice are not expensive at all, and that is the bulk of my Celiac daughter's diet. There's a few other gluten-free specialty products we get that are staples in her diet, but I've managed to keep our grocery budget about the same it was before she was diagnosed. The key to the gluten-free diet and mainstream products is read, read, read, read, read the labels. It's more time consuming than expensive, IMO, and requires a bit of planning. You'll get to know the companies you can trust pretty quickly.

Def stay on the gluten until you can get her tested--but as you'll probably hear--tests aren't always reliable, so if it goes on for too long, it's always OK to do a gluten-free diet trial.

Thanks for the advice. I was born with a genetic kidney disease, so we already have a lot of healthy foods in the house, but I think the thing that scared me the most was bread-type items. Thankfully, if we have to go back on the diet, we already have tons of rice from a long time ago. I was also nervous about spices, but that turned out to be easy.

Tomorrow I'm gonna try for a same-day appt, and hopefully we can get the test done right away. She's been back on a regular diet since last night, and after being on a gluten-free diet for 2 days, she woke up this morning with an improvement in her rash for the first time in weeks.

I'll post more then I hear something. =)

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Quick update:

Her GP thinks I was right, that she has celiac disease, but she didn't do blood tests just yet. She referred Alicia to a gastroenterologist (sp) and said she could get blood now, but didn't want Alicia to be stuck twice (in case he knew of other tests she didn't or something I guess). So she sent an urgent consult. The only test that was done was a stool sample to see if a bug had something to do with her short stature and cramps. We lived out of the country for several years, so you never know...

One question:

It's about that endoscopic biopsy of the small intestines. If the blood tests come back neg, aren't those biopsies a little much for a 7 year old to go through? If the diet alone can take away the symptoms, why test now and not later when she's old enough not to be scarred? It just seems so...invasive. I know I'm a little ahead of myself here, but just wondering.

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Quick update:

Her GP thinks I was right, that she has celiac disease, but she didn't do blood tests just yet. She referred Alicia to a gastroenterologist (sp) and said she could get blood now, but didn't want Alicia to be stuck twice (in case he knew of other tests she didn't or something I guess). So she sent an urgent consult. The only test that was done was a stool sample to see if a bug had something to do with her short stature and cramps. We lived out of the country for several years, so you never know...

One question:

It's about that endoscopic biopsy of the small intestines. If the blood tests come back neg, aren't those biopsies a little much for a 7 year old to go through? If the diet alone can take away the symptoms, why test now and not later when she's old enough not to be scarred? It just seems so...invasive. I know I'm a little ahead of myself here, but just wondering.

My daughter's biopsies showed no "real" damage but did show a generalized disaccharidase deficiency (lactase is not the only enzyme produced in the villi and a generalized defficiency is indicative of a disease such as Celiac.) I know my daughter's GI would have diagnosed her based on her positive blood test. In fact, I know he would have diagnosed my son with Celiac based on a sister with Celiac and a change in growth pattern once he went on his trial diet (he had a negative blood test and no biopsy).

I know that I was in major denial when my daughter was diagnosed. (A little background, we were dealing with acid reflux that was better, but not gone with medication. It had been intermittent for a little over a year and then steady for the 4 mos prior to diagnosis. She wasn't missing school. It wasn't keeping her from doing anything she wanted. She was slim but not too thin and still is.) I needed all the test results to convince me plus an opinion from a second doc . . . yep, major denial. She had no problems with the endoscopy and in fact, we were allowed in the procedure the entire time (I don't think most docs allow that though). It is a procedure though and every procedure has risks. If you don't want to do the procedure, your doc may be totally willing to diagnose base on symptoms and a trial diet resulting in removal of symptoms. You'll have to ask the doc. Also, like my daughter's doc, an endoscopy will allow them to look for other issues/causes/explanations. Prior to the endoscopy, the doc had Eosonophilic Esophagitis at the top of his list of probable causes so the endoscopy did provide us with some good diagnostic info. Some people don't need an official diagnosis to stick with the diet. Some people do. Some people don't want an official diagnosis because of insurance reasons. Having an official diagnosis, the school takes me seriously. She's got a letter from the doctor in her file. Would they have taken me as seriously without the note? I have absolutely no idea. I have become great friends with the school nurse during the whole process. I should ask her just so I have a little more insight to help people who self-diagnose.

Knowing what I know now, if I had thought it was Celiac/gluten intolerance I would have still done all the testing (that's the kind of person I am) but if the tests all came back negative, I would have done a trial diet. Then proceded based on the results of the trial.

Questions you need to ask yourself . . . What are the risks? (and get this info from your doctor not from "somebody who knew somebody that had . . . " Do you need the official diagnosis to stick with the diet? Will your daughter need it when she is in control of her diet? Are there any other possibilities that the GI needs to invistigate?

Let us know how you're doing and keep asking questions when you have them.

Good Luck.

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Both of my kids had the blood tests and biopsies. DD was 4 at the time, DS was 2. her blood panel came back positive, biopsy positive. His blood test was negative but he was having so many problems that they went ahead with the biopsy and it was "suspicious but not positive", however, our GI diagnosed him purely based from his incredible dietary response. He went from being what appeared to be semi-functioning autism to a totally normal child in less than a week, not to mention the impressive weight gain!

As far as the biopsy goes, they both did fine, their Dr. is amazing and I really think it was harder for me than it was for them ;)

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Yes, the biopsy procedure really isn't that bad. Harder on us (the parents) than the kids really. My son was four and it was done at Children's Hospital so he was totally under. It took less than 10 minutes for him to go under and for the doc to come out and tell us his initial results. The official biopsy results took another week and a half.

I'm like the previous poster who likes to have definite answers. Plus, my boys are young and compliant now. But come the time in the not so far off future... Also, their doc told us the biopsy was our choice but he suggested it because they also look to see if anything else is going on that could affect healing, how much damage is done, etc. Finally, we opted out of the biopsy for our 2 year old because he had positive blood results and the doc was willing to diagnose based on that plus the family history (his brother's positive blood/biopsy) and now, once we see him for follow-up, his obvious improvement with the gluten-free diet.

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