Feeling Frustrated

xander42204 · June 10, 2006

Hi- I'm new to all of this and feeling very frustrated. Our son was diagnosed with Celiac when he was 18 months old through blood tests and a positive biopsy. The doctor took another biopsy this week to confirm that his intestines were healing after eight months of being on the gluten-free diet. Well, so far we did not get the good news we had expected. From what the doctor could see the villi are still flattened and he said he'll know more once the biopsy results come back. We have kept him on a gluten-free diet since he was diagnosed and do not know what we are doing wrong. He still has some bouts of diarrhea occasionally, but he has grown and gained some weight. Outwardly, he looked like he was doing much better. I was just wondering if anyone else has a child that did not respond to the gluten-free diet or if anyone has any thoughts or suggestions. We live in a small little town where the word celiac is foreign and we feel very alone, but we are trying to say positive. Appreciate anything you have to say.

AndreaB · June 10, 2006

Did the doctor think there had been any healing at all? I know this takes time.

Also, does he eat any soy products? I have read that soy damages the intestines as much as gluten. Just a thought. A lot of people have problems with dairy until their intestines have healed also. If he eats soy give that up and see if his occasional problems go away. Then a few weeks later remove the dairy and see if that makes a difference. When you add them back it note any changes to determine whether that food is a problem.

Don't give up. He'll continue getting better, it may be that other things need to be removed.

mouse · June 10, 2006

You might try taking him off of dairy. I have read that the small intestine sometimes reacts to dairy, just as it does to gluten. After he is healed, you can then add it back in. I am sure that others will post about this. This is the weekend and the forum activity is not as great as during the week.

June 10, 2006

you have to make sure that absolutely everything he comes in contact with is gluten free. Kids have bad habits of putting their hands in their mouths and if he's say, playing with playdough or picking up dog food or cat food or even finger paints that might have gluten, then he is not gluten free. We learned this the hard way with my daughter. She was playing with playdough every day at preschool and continuing to get sick and break out in hives (which was another of her weird symptoms) and we didn't realize that playdough had gluten in it.

Especially if you are in a small town and don't have a lot of experience with gluten free, there is a learning curve... it takes time to learn where all the hidden glutens are and sometimes things that you might think are gluten-free, are actually not.

I also agree with eliminating dairy for a while... if that doesn't help, try eliminating soy... don't give up though.

OH OH... VITAMINS! Make sure his vitamins (if he takes any) are gluten-free, any medications he may be on also have to be gluten-free, lotions, shampoos, soaps, etc...

mart · June 11, 2006

Sorry to hear this. I know how worried you must be. I agree that you have to re-check everything in your son's environment for gluten. However, remember that it can take up to a year, sometimes longer for the villi to heal. Also, if your son has grown and gained weight, that is a definite sign of some healing (according to my doctor). Also, what do his stools look like (color, etc.)? Darker, formed stools are a good sign of healing in children.

key · June 11, 2006

I think everyone has made good suggestions. I think that you should first make sure he isn't getting hidden gluten somewhere. Check his toothpaste, soaps, etc. Also under "natural Flavors" on packages they can hide gluten. You really have to call every company to make sure that there isn't gluten, unless it clearly states it on the back. Sometimes there is a risk with companies that make products on the same line. There is a risk for cross contamination. They will tell you this when you call usually.

What is he eating mainly? Does he eat alot of dairy? Soy?

Let us know if you have anymore questions. Stick around here if you can, there is alot of great information.

Do you have a healthfood store you can shop at for specialty gluten free products?

Monica

xander42204 · June 12, 2006

This is like a breath of fresh air for me- others who actually understand what I am talking about. I am so tired of getting the "crazy looks" when we go to a restaurant or the grocery store. People seem to be either extremely rude or very kind. You have all been so helpful. When our little one was first diagnosed I asked the doctor about baby wipes, shampoos, soap, etc. He told us that we did not need to worry about that type of stuff, but apparently we do. What do you recommend for us to use? I feel like we've been doing everything wrong so far. What about cleaning supplies- such as Clorox antibacterial wipes, etc.? I have been giving him the Poly-Vi-Sol w/Iron liquid vitamins because I had been told they were gluten free. I did discover that one product we had been giving him (Kellogg's Fruit Snacks) does contain trace amounts of gluten. It was listed in the Celiac Product Listing as a gluten free product, but when I called about a new variety that had just come out with they told me that none of their products are gluten free. We started taking away milk today, so we'll see how that goes. Some of the gluten free products he eats do list soy as an ingredient. I'm confused though- he went through allergy testing in February and he was not allergic to soy or milk products. What do you give them in place of milk for their diet? I just don't want to screw anything else up, so I'm sorry if I'm full of questions. Thanks for all of your help- we really appreciate it

AndreaB · June 12, 2006

Have you tried Almond, Hazelnut or Rice milks?

I was using Rice Dream until we got our enterolab results. Since we are gluten intolerant I have quit drinking it. I don't like the Pacific Rice very well personally but many other do.

Wait a month and try adding back in small quanitities of milk and see if he can tolerate it. It's challenging to find calcium for them but if nothing else you could try and find some vitamins for him.

There is calcium in almonds, broccoli and other dark greens like kale, chard, mustard greens.

Calcium foods are flaxseed (meal is more available for absorption), flours: almond, teff, amaranth, mesquite, hazelnut, garbanzo, garfava, buckwheat bran, potato, montina and quinoa.

Seeds and grains: Flax seed, teff, amaranth, rice (white,long grain, parboiled, enriched), quinoa, sesame seeds, sunflower seeds, pumpkin seeds, sorghum, rice (brown, long grain), wild rice, millet.

Hope this helps a little bit.

ryebaby0 · June 12, 2006

The reason you have to have gluten-free shampoo, etc. with little ones is the chance that they will put their hands, etc. in their mouth -- and ingest any gluten. Trace amounts are enough to cause problems! If he is not completely healed, he's likely to be lactose intolerant, but that will not necessarily be permanent. The villi in his small intestine destroyed by the celiac disease reactions ALSO have the lactose-digesting parts. So he probably isn't allergic to milk (or soy) if it didn't show up on his tests. Many celiacs also have other food intolerances/allergies, though, so you see people talk about that here. We used Almond Breeze "milk" and Silk soy milks and had no problem. Rice Dream is not gluten-free (has barley malt in it, or at least it used to). It took my son about 9 months to get back to milk, but he was very very sick.

Try reading the products forum here, to get a better idea of non-food problems. It will get better, we promise. Ask as many questions as you need to, because we've all been there

joanna

TCA · June 12, 2006

My daughter started losing weight because of a curel hand lotion I had started using. She went from gaining great to losing. On here I learned that lotions, etc. could be the culprit. I took a Sat. and cleaned the house out of all things gluten and she's been gaining great ever since!

Cheri A · June 12, 2006

((Hugs)) ~ I don't have anything different to add. Just wanted to tell you that you're not alone. Keep coming to this board for support!

June 12, 2006

I get my daughter the Betty Crocker fruit snacks and fruit roll ups, they are a General Mills company and will not hide gluten in the ingredients... Don't use Brach's fruit snacks, they don't guarantee any of their products to be gluten-free, same with Kelloggs fruit snacks.

Huggies Natural Care Baby Wipes are gluten-free, I use Suave 2 in 1 shampoo for kids for my daughter, and Kiss My Face Aloe and Olive Oil Moisturizing Lotion.

Lundberg makes a Rice Milk that is gluten-free and good...

xander42204 · June 15, 2006

Hi- I just wanted to give everyone an update on my little one. I really appreciate all of the help you have given me and I am definitely going to stick around here. I wish I would have used this sooner- it's great. The doctor called and much to his surprise and ours he had wonderful news. The biopsy results came back and showed there is no inflammation in his intestines. He is absorbing and getting what he needs right now. They were really pleased with the internal change that has occurred in the past eight months. We were so upset after what the doctor initially told us, but I'm glad it happened that way. We have learned so much more in the past few days about the disease.

June 15, 2006

xander42204 said:
Hi- I just wanted to give everyone an update on my little one. I really appreciate all of the help you have given me and I am definitely going to stick around here. I wish I would have used this sooner- it's great. The doctor called and much to his surprise and ours he had wonderful news. The biopsy results came back and showed there is no inflammation in his intestines. He is absorbing and getting what he needs right now. They were really pleased with the internal change that has occurred in the past eight months. We were so upset after what the doctor initially told us, but I'm glad it happened that way. We have learned so much more in the past few days about the disease.

I'm so glad to hear that. Keep up the good work!

ladyx · June 20, 2006

AndreaB said:
Have you tried Almond, Hazelnut or Rice milks?

I was using Rice Dream until we got our enterolab results. Since we are gluten intolerant I have quit drinking it. I don't like the Pacific Rice very well personally but many other do.

Wait a month and try adding back in small quanitities of milk and see if he can tolerate it. It's challenging to find calcium for them but if nothing else you could try and find some vitamins for him.

There is calcium in almonds, broccoli and other dark greens like kale, chard, mustard greens.

Calcium foods are flaxseed (meal is more available for absorption), flours: almond, teff, amaranth, mesquite, hazelnut, garbanzo, garfava, buckwheat bran, potato, montina and quinoa.

Seeds and grains: Flax seed, teff, amaranth, rice (white,long grain, parboiled, enriched), quinoa, sesame seeds, sunflower seeds, pumpkin seeds, sorghum, rice (brown, long grain), wild rice, millet.

Hope this helps a little bit.

Just wanted to let you know you can get almond milk...but we use silk soymilk...here is a link to one almond milk that says it is gluten free Open Original Shared Link