Please Help Me Save My Daughter!

[kaleesmom]

My daughter is almost 3, was diagnosed with celiac disease a year ago and was doing great on a gluten-free diet until about 3 months ago. Since that time, she has progressively worsened with her presenting symptoms from a year ago - severe constipation, weight loss, fatigue and irritability.

I have searched everywhere! I have thrown away anything not specifically labelled gluten free, we've gone back to our original grocery items: Bell and Evans Chicken, glutino bread and crackers, envirokids krispy rice bars, glutino pretzels, horizon cheese, rice and potatoes, tongo tunafish and that is about it. Yet, she still continues to worsen. We've changed back to our original soap (Johnson and Johnson baby shampoo and liquid soap) and threw away our sunscreens. I've even taken away stickers and bandaids in fear of the adhesives.

Could it be our dishsoap? laundry detergent? Her bubbles that she plays with? I have no idea and my daughter is wasting away. Please help!!! Does anyone have any experience with cross contamination or gluten in any of the products labelled gluten free?

[RiceGuy]

Since so many of us have experienced additional intolerances and/or allergies after going gluten-free, that's what occurs to me first. Have you tried eliminating other top allergens, such as dairy, soy, corn, nuts, eggs, etc?

[nasalady]

  kaleesmom said:

My daughter is almost 3, was diagnosed with celiac disease a year ago and was doing great on a gluten-free diet until about 3 months ago. Since that time, she has progressively worsened with her presenting symptoms from a year ago - severe constipation, weight loss, fatigue and irritability.

I have searched everywhere! I have thrown away anything not specifically labelled gluten free, we've gone back to our original grocery items: Bell and Evans Chicken, glutino bread and crackers, envirokids krispy rice bars, glutino pretzels, horizon cheese, rice and potatoes, tongo tunafish and that is about it. Yet, she still continues to worsen. We've changed back to our original soap (Johnson and Johnson baby shampoo and liquid soap) and threw away our sunscreens. I've even taken away stickers and bandaids in fear of the adhesives.

Could it be our dishsoap? laundry detergent? Her bubbles that she plays with? I have no idea and my daughter is wasting away. Please help!!! Does anyone have any experience with cross contamination or gluten in any of the products labelled gluten free?

I'm truly sorry to hear about your daughter's issues....it's so hard when a little one is sick and you feel as though there's nothing more you can do!

It sounds as though you've been very thorough in eliminating gluten, unless there is cc in a "gluten free" product. I've had experience with that more than once...I once purchased millet flour that was supposed to be gluten free but it wasn't and it took me weeks to figure out why I felt so bad.

If you want to check and see if there's something you haven't thought of when eliminating gluten, here's a good primer on how to go gluten free that's very detailed:

Open Original Shared Link

However, it may be necessary to eliminate more than just gluten at this point. I know that she's only two so may be a picky eater, but some people on this board have reported that they had to actually eliminate all grains, dairy, and even foods like potatoes before experiencing healing. Many here follow the Specific Carbohydrate Diet (Open Original Shared Link) or the Paleo Diet (Open Original Shared Link) or slightly modified versions of these and have had very good results.

There is a (very long!) thread about the Specific Carbohydrate Diet at this link:

https://www.celiac.com/gluten-free/index.ph...c=54285&hl=

The author of the Specific Carbohydrate Diet believed that gluten was not the only issue for celiacs; her diet is based on the diet prescribed by the first doctor to successfully treat celiac disease in children in the 1920's, Dr. Sidney Haas.

I'm starting to use the recipes made with coconut flour and almond flour instead of the rice, sorghum, millet flours myself. I know that when I used to follow a strict low carb diet I felt MUCH better! Some great gluten-free recipes with almond flour may be found at:

Open Original Shared Link

Well, I don't know if any of this will be helpful to you, but it may be worth a try!

Your daughter is in my thoughts and prayers....

JoAnn

[kaleesmom]

  RiceGuy said:

Since so many of us have experienced additional intolerances and/or allergies after going gluten-free, that's what occurs to me first. Have you tried eliminating other top allergens, such as dairy, soy, corn, nuts, eggs, etc?

Thanks for the response. We have tried eliminating dairy, although she was able to tolerate them after her initial diagnosis for about 6 months without any problems. she doesn't eat much soy, corn or eggs - she is a really fussy eater. Like me as a kid, she pretty much sticks with the carbs and a rare vegetable here or there.

The odd thing is that as far as I can remember, she is eating the exact same things she did after her initial diagnosis a year ago, and at that time she got better.

[tarnalberry]

so, unless there's something else different in her environment (say, preschool), I'd doubt it was gluten.

other food intolerances are certainly possible, but if she's mostly just eating carbs, she may have a nutritional deficiency that is causing some of the problem. is she getting a multivitamin?

[OptimisticMom42]

Hello, things that came to mind while reading your post.......

Many of us have a hard time digesting the gluten free snacks.

A lot of us intially got better only to relapse because of other food intolerances. I noticed her only protein was tuna. Tuna, even the packed in water ones contain soy oil. And many of the gluten free snacks do also.

If you stop giving her grains and sugars, she will eat fruits and veggies when she gets hungry. I know you are worried about her health and weight and no mom wants her baby to be hungry but it's kind of like taking the bottle away. It's for her own good.

Nut milks and butters would be a good way to get some protein and healthy carbs into her diet. We put the nut butters on apple slices, rice cakes, or just eat it on a spoon. My kids like chocolate almond milk but it does contain soy lecithin so we limit it to school lunch boxes only.

Almost three...... do you have pets in the house..... breathing dog food dust glutened me once and a three yr old would be right down there on level with my mid sized and large doggies.

Can't think of anything else, I know this is frustrating for you, I hope that we (on the forum) were able to help you find the problem.

Take Care, RA

[mstroud]

I'm so sorry you're going through this with your daughter! I've had a similar experience with my son, 8 1/2, who was diagnosed with Celiac in May 2008. I think others have offered great advice and I'm not sure I have too much more to offer.

Was your daughter diagnosed through bloodwork? If so, would it be worth having her rechecked to see if there is in fact gluten in her system which is causing these symptoms? We had to do that for my son when he started to exhibit the same symptoms as before he was diagnosed. They came back 'clear', but his levels weren't off the charts to begin with.

Maybe it would help to keep a journal of everything she is eating, playing with, and touching during the day. I'm very careful about what comes into our home (we have a totally gluten-free home) and found that by accident I'd bought a box of corn chex that was an older, not gluten free box. So, maybe just double check everything before it goes into her mouth.

I did figure out that my son can't handle corn. His symptoms weren't exactly the same as with gluten, but very similar. He was eating a lot of tortilla chips and salsa, tacos, etc and I finally figured out that he had abdominal pain the mornings after he'd eat a lot of tortilla chips. Because of his stomach pains, he'd act lethargic and drop weight because he didn't want to eat anything else.

I hope you can figure out what's getting her whether it's gluten or another food!

Margaret

[lovegrov]

Have you redone the blood tests to see if it's really gluten this time? It could be something else.

richard

[MaryJones2]

There are two gluten-free brands on your list that I tolerated in the beginning but very definitely don't tolerate now so if no other health problems present it might be worth a trial elimination. It might not be gluten - a lot of the items you listed contain soy or corn.

I hope you find the culprit soon!

[Amyleigh0007]

My two-year-old thinks dog food is a tasty treat. We had to move the dog dish to the garage so she would stay out of it. Dog food is loaded with wheat. Could your daughter be into the pet food?

[dilettantesteph]

Read the thread "Gluten Free" foods that got you

https://www.celiac.com/gluten-free/index.ph...c=61731&hl=

Some of us react to the small amount of gluten present in some gluten free foods. Your daughter might be among them. I know that I felt so much better initially when all I eliminated was cereal and bread. Later I seemed to get more sensitive and had to eliminate a lot more.

You could put her on a diet of unprocessed foods for awhile and see if that helps. Later you could add processed items one at a time so that you can tell what bothers her.

[darlindeb25]

Your daughter may be super sensitive like many of us are.

  Quote

glutino bread and crackers, envirokids krispy rice bars, glutino pretzels, rice and potatoes, tongo tunafish

Any of these products would make me ill, just as it bothers so many of us. The "gluten free" label does not necessarily mean totally gluten free...it simply means the level of gluten is lower than 20ppm, which 20ppm makes me very ill, as does 5ppm. It has taken me a long time to figure this out. For years, I could not figure out what glutened me, especially when I live in an entirely gluten free home. I do not eat out, I rarely lets others cook for me. Often times the gluten free grains...corn, soy, rice...are all cross contaminated. Some of us have come to realize, we just can't eat any grains. It's a huge learning curve...many do not agree with those of us who are super sensitive. I wish I was like them and could eat all those gluten free items, but, I'm not. I'm not even so sure they are so lucky, maybe it's better to be like me.

[jerseyangel]

Envirokids are not made on dedicated lines--I can't tolerate the bars. I would be suspicious about the Bell and Evans, too and check to see if they are made along with the "regular" variety.

[lovegrov]

If we're talking just plain raw Bell and Evans I don't see what's to be suspicious about.

richard

[jerseyangel]

  lovegrov said:

If we're talking just plain raw Bell and Evans I don't see what's to be suspicious about.

richard

You're right--the plain is fine. Somehow I was thinking the nuggets.

[ang1e0251]

I was wondering about pet food too. What about litter? I don't know if that has gluten or not? Has she been exposed to any construction projects with dry wall? Some glues in construction can have gluten. What about the obvious like Playdo at church or friends' or preschool?

Do you keep a food journal for her? Sometimes it just takes the act of writing out everything she eats or comes in contact with along with her symptoms to clarify the problem. It seems simple but it really does help.

I'll be thinking of you. You're such a good Mom and your daughter is lucky to have you looking out for her.

[amysmom]

You questioned dish detergent. I changed dish detergents a few weeks ago to an environmentally friendly dish soap and it made my daughter very sick. After several weeks of her being sick I looked at the ingredients and the second ingredient is plant-basedd cleaning agents. I called the company, they took my information and promised to get back to me. I never heard, rewashed all my dishes with Palmolive and haven't had any more problems. Also over the summer she had a wart on her foot and I used the clear away disks to put on it and it caused her to have difficulty swallowing.

Good Luck - it is very frustrating.

[mommida]

At this point I suggest you go back to a pediatric gastroenterologist. You have over a year experience with the gluten free diet. You saw improvement, never changed a diet, and now there are "new - old" symptoms.

That was our experience with about 4 years of improvement. My daughter's Celiac symptoms returned and then worsened. She was then diagnosed with a different (not proven related to Celiac) disorder that hasn't even been classified as an auto-immune disease.

My thoughts and prayers are with you.

[kaleesmom]

Thank you so much everyone for your help. We went through our kitchen and threw away everything that we had introduced in the last 4 months and went back to our original staples (Glutino products, bell and evans, Skippy peanut butter, etc) and we have seen an improvement. I did throw away my 'green' cleaning supplies as well (I called the company and all they could do was read me back the ingredients listed on the back of the bottle). My husband is convinced it was the 365 peanut butter from whole foods (he is convinced absolutely everything has cross contamination). As for me, I think either the cleaning supplies, stickers (she played a game for awhile where we would put stickers all over our hands and face) or the sansgluten cracklebred.

I can't thank you enough for all of your helpful suggestions and ideas!!

[Benshell]

I'm new to this, but I hope this helps.

You should have your pediatrician check your daughter's thyroid levels - TSH, T4 and T3, plus a whole thyroid panel (thyroid antibodies).

I'm new to this as my daughter just was diagnosed with celiac at age 6, but has been treated for hypothryoid since birth...the symptoms you describe - constipated, weight loss, tiredness, irritability are the EXACT symptoms of hypothyroid. Also, I just read that over 70% of celiac patients also have thyroid disease.

So since changing all the food hasn't worked, I would definately check her thyroid levels (blood test, results come back in 1 day). It's much easier to handle then celiac, just a pill once a day and monitoring by a pediatric endocrinologist.

ALSO - make sure you get the TSH #'s. Most regular pediatricians feel that a TSH level of 1.0-5.0 is normal (according to the labs). However, any pediatric endocrinologist will tell you that anything higher than 3.0 is considered Hypothyroid.

I hope this helps, please get back to me and let me know. Good luck.

M