Gluten Free 6 Weeks

[SarahJimMarcy]

Hi everyone!

My daughter was diagnosed with celiac. She's 13. We've been gluten free for 6 weeks. Her stomach pain seems to be subsiding, but symptoms still include fatigue, rash/acne, upset stomach (not pain), heartburn and nausea. She has missed a period. I've got her taking a multi-vitamin, B, D and fish oil. Also drinking Lifeway Kefir milk, which has 10 probiotics. She takes Lactaid with any dairy.

As a 13 year old, should all her symptoms be cleared up by now? Should her vitamin and iron count be tested? I am having a hard time sorting out what are ongoing symptoms and what could be chalked up to being a teenager.

She did Prilosec for 6 weeks as well and thinks she should go back on it.

I do not feel I have a pediatrician who understands celiac or can help manage it. In fact, I am the one who finally made an appointment with a pediatric GI; it wasn't our pediatrician's idea. The GI doctor said only that she should be feeling better by now.

We are in the Twin Cities, MN.

Thank you for any help and advice.

[ravenwoodglass]

Make sure you check all her supplements and other meds with the makers for gluten. Do read all ingredients on supplements to make sure they don't have barley or wheat grass as they can still say gluten free but those are not safe for us.

Have you deglutened your home? She needs her own toaster for gluten free breads, her own condiments, butter, nut butters etc. It is best not to bake with gluten flours for others as the flour will become airborne and can take up to 48 hours to settle. That will contaminate surfaces and gluten her. You will need a new strainer for her foods as well as replacing any wooden utensils are scratched nonstick pans.

It is a good idea to go with whole foods for a while and also to drop the milk products. Some of us are sensitive to casien, milk protein as well as lactose so hold off on dairy until she is well healed. Some also have problems with soy so if you can keep soy consumption to a minimum until she heals that might also help. When she is well healed add back in the soy and dairy one at a time for a week or so and see how she tolerates them. While she is off dairy there are many good alternative milks, Pacific brand Almond, Hemp Milk or Rice milk, but NOT Rice Dream.

If you go to a restaurant do pick ones that have a gluten free menu.

If she was on Prilosec for a while before diagnosis there can be some rebound effect when someone goes off it. Try name brand Pepto Bismal liquid and see if that helps.

It can take a while to heal but going with whole foods will help speed up the process by reducing her risk of cross contamination.

The rest of the family should also be screened for celiac even if they don't seem to have any symptoms. It is common for there to be more than one in the family and some present with symptoms other than gut issues or even at times no symptoms at all.

Do ask your ped to check her vitamin and iron levels. Since she is diagnosed that shouldn't be a problem. If for some reason the ped won't do it ask the GI doctor.

I hope she is feeling better soon but it can take awhile. It is hard to be patient and the gluten-free lifestyle can be a bit overwhelming at first but you will get the hang of it.

[maximoo]

Hi: My DD had a blood test in Jan & has antibodies 4 celiac and just turned 13 in Mar. I had her retested & her #s were even higher. Dr (pediatric GI) told me not to put her on a gluten-free diet until he does biopsy which was scheduled in Jun. Well I just decided I am not letting her get a biopsy and I feel I should start her on the gluten-free diet very soon. The only reason she was referred for the blood test was due to her short stature. She is 4'7 & weighs 74 lbs & looks like a typical 9/10 yo. She is no where near getting a cycle yet, and has a vit D deficiency. (I actually feel annoyed when Drs. keep asking if she has a cycle yet :/ ) However she does seems like she is growing a little now since she started taking the supplements & I am more vigilent in making her take her vitamins. (Had to chg her vitamins b/c the flintstones ones she was taking has gluten)

She is moody, cranky, irrational, somewhat paranoid & is a major drama queen.(makes mountains out of molehills) I learned that some of these traits will decrease with the gluten-free diet, but I'm pretty sure its mostly being a teen. no acne (yet)

I think you should chg pediatricians The fact that your DD still has symptoms (which may or may not be related to celiac) and yr pediatrician dismisses them is more than enough reason to DISMISS that Dr.

Some of the symptoms you describe may be attributed to just being a teen

acne-- normal teenage affliction. Get a good daily cleansing/treatment regime going day & night.

rash--could be contact dermatitis or allergy to something-- Have you tried to chg laundry soap, bath soap, other personal products? Is your dghtr using other peoples (like girlfriends) products like perfume, nail polish, lotion, etc. Instruct her not to use other peoples stuff.

upset stomach/nausea--could be everyday stress (school/family,etc) or she isn't eating frequently enough. my DD lets herself starve before she announces she is hungry. Or she could be sneaking foods with gluten or getting glutened w/o her knowledge. Have her write down everything she eats & the times. Also kissing people who are not celiac I hear can cause a reaction (unless they brush their teeth first)

Fatigue--again could be related to not adhering to gluten-free diet or she is really tired not getting enough sleep. Teens need a minimum of 9 hrs sleep.

You've got to be a detective. Find out if her food is getting cross contaminated. Try the simplest solutions first (like chging soap, getting more sleep, etc) & go from there. Do be aware that personal products sometimes contain gluten. (especially lipstick)

This disease will require us to dig deep & think out of the box, I am new to this too & boy there is so much to learn. Best of Luck to you & yr DD!

[Debbie B in MD]

You should have her thyroid tested. My 15 yo with celiac also has hashimotos. Fatigue is one of her main symptoms.

[SarahJimMarcy]

Thanks everyone! We went gluten free as a family, but I am going to double check the ingredients on everything. Also, do almond milk for a while. And I may have found a tween health clinic at the U of MN where I'll get her vitamin, iron and thyroid tested. Thanks for all the advice. It's hard to know when to worry or when it's time to take action! Time to get to work rechecking everything!

[SarahJimMarcy]

Moving to whole foods, too. Forgot to mention it!

[SarahJimMarcy]

I never thought of laundry detergent before. I've been using a "natural" lavender detergent, but I am finding "natural" means plant based which usually means gluten. All the other advice is much appreciated as well. The teen stuff is hard enough; pile the celiac on top of that and it's even harder. Best of luck to you, too!

[SarahJimMarcy]

Thought I would send an update. My daughter got some blood drawn and her Vitamin D is low. W also have an upper GI scheduled and have been referred to an allergist. Does this all seem logical to you guys? To me, the Vitamin D makes sense. I think the upper GI makes sense, but should I hold off on seeing an allergist? If so, is it simple blood testing or the poke-you-all-over kind of testing?

[cahill]

Thought I would send an update. My daughter got some blood drawn and her Vitamin D is low. W also have an upper GI scheduled and have been referred to an allergist. Does this all seem logical to you guys? To me, the Vitamin D makes sense. I think the upper GI makes sense, but should I hold off on seeing an allergist? If so, is it simple blood testing or the poke-you-all-over kind of testing?

I think the allergy testing makes sense, but I would ask them about doing blood testing. Try to avoid the poke-you-all-over- AND- gluten-you kind .

I saw an allergist in April . He did blood testing . Mine came back positive for eggs and almonds

[T.H.]

... should I hold off on seeing an allergist? If so, is it simple blood testing or the poke-you-all-over kind of testing?

I'd double check that your allergist works with a lot of food allergies rather than mostly environmental - there seems to be a very different mind-set between the two. I'd do a local check, because all allergists tend to say that they do food allergies, but not all of them are that knowledgable.

Re: the testing itself - if your daughter does not get hives, then blood testing and poke-testing are pretty inaccurate. They may give you an idea where to start, but there are a lot of false positives AND false negatives with allergy tests unless it's for severe ones.

A food journal and elmination diet, however, can tell you just as much, and often with more accuracy, at least in the sense of 'what makes my children feel crummy,' you know?

If you do this, you'll want to look up what ingredients make up everything so you can keep good records - even salt usually has added ingredients. Also, keeping track of brand names is helpful, too, because some companies might have the same contaminants on all the food processed on a particular line.

[SarahJimMarcy]

I am so glad to have this community as a resource. It's more helpful than all the doctors we've seen - combined. Everyone gives advice and shares ideas I would never think of. I thought an allergist was an allergist and I wouldn't know differently if you all hadn't taken the time, so thank you! And the food journal/elimination diet makes sense. Now that we all see the benefits, it's easier to put these changes into place.

I also want to put some extremely good news out there: for the first time in 7 years, my daughter's anxiety seems to be going away. She let me know this last night. It's so great to see a kid being a happy kid again!

[SarahJimMarcy]

Did lots of blood tests. Found out that her Vitamin D is low. Getting there...

[Marilyn R]

The poke you in the back allergy testing helped me! I never would have guessed that I was allergic to turkey or pecans. Or clams!

I'm thinking about getting re-poked becase I have a new insurance plan. It could be interesting to see the results compared to last year and it could be interesting to see if I can just have the testing without the before and after MD visit. (The nurse who stuck me with all of those needles game up the results when I probed her with questions. )

The allergist didn't give any more info or insight when I had my follow up up visit. He was nice, but I'd rather stick the $30 co-pay (used to be $50) into the food budget.

[sb2178]

Another follow up: make sure they tested for ferritin specifically. Iron deficiency anemia is often a later symptom of iron deficiency, but the usual test (hemoglobin and hematocrit) look for anemia.

Low ferritin is pretty common, and I'd consider treatment if it's under 25. Even if the normal rage says 10, or 15. Injuries among athletes increase sharply when iron stores are low, and it's hard to believe that growing kids are also not affected (esp with a skipped period but that could be a teenager thing).

Did they test for B12? That's another one where the reference ranges are pretty wide, and she may need extra if she's on the low side of normal. Various positions are held on where the cut off should be, but anything under 300 merits thought of treatment, and even anything under 500 might be worth some musing thoughts.

Is she babysitting? Wearing make-up or chapstick? Any horseback riding? Pets in the house? Taking home ec at school? Spend a lot of time at a close friends' house where she could be exposed? Even something like nail biting or chewing on pens can lead to a dose of gluten. The cat shop where I get my cat food uses wheat-based cat litter, for an example of weird places of danger. I certainly wouldn't take a handful and eat it, but pet the cat and then pop across the street to buy and eat a gluten-free cookie? Quite possibly. But fortunately, someone pointed out the litter to me early on and I'm pretty compulsive about washing hands before eating now.

Heartburn and nausea in a "healthy" teenager is not normal.

[SarahJimMarcy]

In the results that came back last week, her D is at 24.2, so the NP said to take 2000 IUs of Vitamin D a day. Will that be enough? It seems really low and I am wondering if her pediatrician should prescribe a higher dose.

Also, I am confused by a high B12 result: It's 1071. Should I take any action on that?

I see they did not test ferritin. Hemoglobin and hemocrit came in within what they consider normal range. I'll add ferritin to the to do list!

[SarahJimMarcy]

Just found out through some other parents of celiac kids that the Amy's Gluten Free Mac & Cheese is, in fact, not gluten free. It's prepared in the same facility as wheat. Very disappointing, especially when the first words you read on the box are 'gluten free', The investigation continues...

[sb2178]

The B12 is probably just fine-- hard to know without seeing the exact reference ranges.