celiac disease

rachboston60

Hi all, Its been quite a while since I've posted. I'm looking to connect with anyone who has had a young child diagnosed with celiac disease - my 2 year old is in the process of (probably) getting this diagnosis.  If you have experience with this let me know!Thanks.

rlyttle

My DS doesn't have it, but I do. I do incorporate A LOT of GF food into DH $ DS's diet. It was really hard at first, but it gets easier, MUCH easier once you get into a new routine. Here is a list of staple items that really help me. Also, my doctor tells me to stick to meat, potatoes, veggies and fruit. That really helped getting me started. Udis bread products (life saver!!!) Glutino pretzels GF spaghetti (most brands are fine) Chex cereal GF Betty Crocker baking mixes GF Tyson chicken strips/nuggets Mostly I cook naturally GF food, but its always great for me to have this stuff in my house. Feel free to PM me anytime.

TiffanyBerry

I've been GF for... 11 years now? Something like that. It is a huge learning curve, but gets easier. Celiac.com has an excellent forum with lots of great support from helpful people.

There are lots of GF subs available, and they can be a great tool to help you as you transition.

We eat entirely GF at home, and it doesn't feel like we are missing anything. (Eliminating dairy was harder!) We have friends over for dinner all the time, even for a big Thanksgiving dinner, and I give out baked goods... Everyone loves my food (and it's not complicated stuff). So you don't have to feel like there is no good food left.

But it is a huge learning curve, and learning to navigate a gluten filled world - for your child especially! - is definitely a challenge and will take time, patience, and a lot of practice. But you will get there!

If you have playdough around, I would start by getting rid of it (it's made with wheat) and using Model Magic unless you want to try making your own.

rachboston60

Thank you ladies.  I will check out that website.  I am working on transitioning our eating habits, which is an adjustment.  I'm also looking for advice on navigating the process of getting a diagnosis.  My daughter has been having symptoms for about a month now (consistent diahrea and distended belly) and the specialist we saw said he is predicting (not diagnosing) celiac.  He wants to do an endoscopy, which would involve "putting her under" -- they weren't able to schedule this procedure until mid-January.  The doctor does not want me to change her diet in the mean time, because he doesn't want the results of the endoscopy to be invalid.  Hope this makes sense.  I've so far ignored his advice and have been gluten-free with her for 5 days now.  No change in her symptoms yet of course, but we're hoping.  Do we cancel the endoscopy and just keep going with the diet?  Do we keep giving her gluten and do the procedure?  Any advice? 

kcisthebombdotcom

You need to take her off the gluten free diet immediately. To accurately test a child for celiac they should be consuming gluten containing foods. You don't want your child to follow this diet unless its a medical necessity.

TiffanyBerry

Yup - you can't get accurate testing if she's not eating gluten. Take the net few weeks to read up on ingredients, cross contamination, clearing out the kitchen, dealing with preschool/daycare/sitters/family, and so on.

rlyttle

Honestly if we're my child I would stick with the diet. If the diet works there really isn't a reason to be labeled "celiac" at this point. If the diet works you can proceed as your child being gluten intolerant. The only thing the doctor will tell you to do if the test comes back positive is to go 100% gluten free. Why put your child under and waste a few weeks? I would stick to the diet and see if you get results. I started getting results in a week, with a few symptoms here and there. Those remaining symptoms went away with a month or so. You should ask you doctor about the blood test. It's not as accurate as the endoscopy, but its far less invasive and risky.

rachboston60

rlyttle said:

Honestly if we're my child I would stick with the diet. If the diet works there really isn't a reason to be labeled "celiac" at this point. If the diet works you can proceed as your child being gluten intolerant. The only thing the doctor will tell you to do if the test comes back positive is to go 100% gluten free. Why put your child under and waste a few weeks? I would stick to the diet and see if you get results. I started getting results in a week, with a few symptoms here and there. Those remaining symptoms went away with a month or so. You should ask you doctor about the blood test. It's not as accurate as the endoscopy, but its far less invasive and risky.

Yes, thanks.  This is what I'm trying to figure out... if we should go the route of canceling the endoscopy and just sticking with the diet to see if we get results.    I'd like to know if there is some advantage to getting an "official" diagnosis (which we'd need the endoscopy to get, I think).  For example, insurance? Or some official paper work when she starts school in a few years?  I'd obviously not enjoy watching my 2 year old have this invasive procedure, but we will if we should.  The blood test indicated celiac.  

Thanks for your input everyone. 

TiffanyBerry

For a kid, who is going to enter the school system, my personal opinion is that the "label" is important.  Celiac is covered under the ADA (Americans with Disabilities Act), so schools can be required to make special accommodations if they are necessary (allowing home-made lunch if applicable, allowing special tools/equipment (gluten free pasta for art projects in kindergarten, for instance), not forcing a meal plan in a cafeteria that can't accommodate in college - or making the cafeteria accommodate, etc.)  It also reminds doctors to be aware of things that are more likely to occur in celiacs - like other autoimmune diseases, a higher risk of some types of pneumonia (hence the recommendation for the pneumonia vaccine for celiacs, and can encourage doctors to maintain followup testing for nutritional deficiencies and hormone imbalances (like Hashimoto's, which is correlated with celiac).  It can possibly be a negative when it comes to independent health insurance, as it is considered a pre-existing condition that can raise rates, but I'm not sure how that will play out with the Affordable Care Act.  

But sometimes, when your kid turns into a teenager, just having a piece of paper that tells him/her that it wasn't just mom making this crazy diet up will help the teenager stick to the diet.  (It is a classic time for kids to wander from their diet, and the changing hormones can mean that symptoms are less noticeable, even though damage is still being done internally do the body.)

As an adult, I am usually a huge proponent of going by effect of the diet alone (if testing wasn't done in the right order).  But it's more complicated with children, who have to be put into the trust of others who may not have any knowledge of the condition, and may or may not have the knowledge and/or ability to speak up for themselves.  Regardless of testing results, though, I always suggest doing the dietary trial for two or three months.  Testing can be less reliable in children (especially those under two), and not all celiac disease is so bad as to show up on biopsy sample slides when caught early.  (Not to mention the problem of docs not taking enough samples in the right part of the intestines nor the personal preferences of the lab tech grading the slides.)

But you say she had positive blood tests.  What tests were they?  How positive?  Sometimes, some doctors will diagnose based on blood test and dietary test results alone.  Though that varies significantly from doctor to doctor.

rachboston60

This is super helpful.  Thank you.  The doctor had us do a blood test, and he said that based on the low levels of "IGA" antibody in her blood (I think I've got that right?) it looks like celiac.  He didn't offer another blood test. The next test he suggested is the endoscopy.  Is there another step we're missing.  

Thanks again. 

TiffanyBerry

I would encourage you to get a copy if her tests. There is a panel of five tests which should be run - total IgA (doesn't speak to celiac directly, but about 10% of Celiacs are IgA deficient, and you need to know this in order to interpret the rest of the tests), deaminated gliadin IgG and IgA, and ... My brain is forgetting the last two (I blame my head cold). It might be the EMA. Any who, the celiac.com forum can help you with that part. It's a combined interpretation of all the tests together that gives you a more accurate picture.

TiffanyBerry

tTg. The other two tests are tTg IgA and IgG.

law&order

rachboston60 said:

This is super helpful.  Thank you.  The doctor had us do a blood test, and he said that based on the low levels of "IGA" antibody in her blood (I think I've got that right?) it looks like celiac.  He didn't offer another blood test. The next test he suggested is the endoscopy.  Is there another step we're missing.  

Thanks again. 

We just finished celiac testing and an endoscopy two weeks ago. My son is IgA deficient which essentially makes the celiac disease panel "inconclusive" and unreadable.  Basically, if a child is IgA deficient, they cannot rule-in or rule-out celiac through bloodwork and must do an endoscopy to determine if they are celiac.  Due to continued poor weight gain and low IgA, we decided to go forward with the endoscopy after monitoring for a year. 

I won't lie, it was nerve wracking, but now that it's over I can say it wasn't that bad.  The hardest part, by a long shot, is keeping a 2 year old happy from 5am-8am when they can't eat or drink anything. They gave him pain meds in PACU which made him sleep in the hospital. But he woke up and was wide awake, ready to eat and drink.  We were home before noon. He didn't nap that day and had some behavioral changes (naturally), but that was the worst of it. 

They look for, and biopsy for, a lot of conditions during the endoscopy. As turns out, my son is not celiac, but has other significant medical issues that they otherwise would not have discovered without the endoscopy.  So, yeah, if I were you I would have my kid on a regular diet ASAP and schedule the endoscopy.  You should let the doctor know your child has been GF for some time and ask when you should schedule. She needs to be consuming gluten in order to accurately test. 

As @TiffanyBerry said, there are a lot of health issues associated with celiac.  I would go ahead and do it, especially with low IgA and celiac-like symptoms. 

More information is better. You want to know.  

law&order

I'll add that the procedure itself was not more than 10 or 15 minutes.  The longest parts are waiting the morning with an NPO toddler and waiting in recovery for the kiddo to wake up.  Otherwise, the actual surgery portion is very very short. 

They let him stay in his own PJs, I took him into the OR and was with him when he fell asleep.  

rachboston60

This is so helpful, guys. Thank you. My daughter was only been gluten free for about 5 days, and we just switched back to regular diet a few days ago. The endoscopy is scheduled for two weeks from now. I'll let the doctor know in case they want to push it back.  

Thanks again. 

diana.filipi

I have a friend whose daughter had to have the endoscopy and had to stay eating all the regular stuff 'till then.  I think it is very important to KNOW.  Celiac shouldn't be messed with.  It was tough for my friend but her daughter has it really bad (severe is a more appropriate term I guess).  They needed to throw many kitchen items out even.