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Please Help, Daughter Diagnosed With Celiac?


Heat

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Heat Newbie

Hi There,

My Daughter who is 9 years old has just been diagnosed with Celiac, we have started her on a Gluten Free diet, which seems to be working because she dose'nt get the pains in her tummy as often as she was? But she get's the pain back every now and then. Can anyone tell what's the best way to deal with the stomach pain? Is there anything I can give her? Anything I can do? It rips me to sheards seeing my daughter in pain like that and there's noyhing I can do? Please any suggestions would be much appreciated.

Cheers TJ.


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Lisa Mentor

Hello Heat and Welcome! You have found a wonderful place.

Everyone here can relate to your frustration because we have been there. I have an additional respect for mothers of children with Celiac.

Some rice, apple sauce or tea may help her tummy rest. Even though gluten free, any foods may still be bothering her until some healing can take place. Gentle foods will help.

Here are some links that may be helpful in the coming weeks:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

happygirl Collaborator

Heat,

Welcome to the board. I'm sorry to hear your daughter has Celiac but I'm happy she has been properly diagnosed. How long has she been gluten free? It can take awhile for the body to properly heal after taking gluten out of her diet. There isn't a cure for the symptoms that come along with Celiac, other than the gluten free diet/healing the Celiac induced damage. However, she may get some symptomatic relief using easy foods like Lisa mentioned, or OTC meds like pepto bismol, immodium, pepcid, or other similar OTC meds for stomach upset/problems.

Let us know what else we can do to help!!

Heat Newbie
Heat,

Welcome to the board. I'm sorry to hear your daughter has Celiac but I'm happy she has been properly diagnosed. How long has she been gluten free? It can take awhile for the body to properly heal after taking gluten out of her diet. There isn't a cure for the symptoms that come along with Celiac, other than the gluten free diet/healing the Celiac induced damage. However, she may get some symptomatic relief using easy foods like Lisa mentioned, or OTC meds like pepto bismol, immodium, pepcid, or other similar OTC meds for stomach upset/problems.

Let us know what else we can do to help!!

Thanks for taking time to reply, she has been gluten free for about 2 weeks now, how long will it take for her body to heal?

happygirl Collaborator

For children, it can take anywhere from a couple of weeks to a couple of months to recover. It can take longer, but often that is in adults who have had undiagnosed Celiac for a long time.

The villi damage will need to heal, and her body will need to start properly absorbing nutrients again, as well. Its a slow but steady process, with bumps along the way, but overall should be a positive, upward trend. Unfortunately it isn't ask simple as taking out gluten and magically being 'all better' - if only!!

Do you have a helpful doctor? Has he provided you with any guidance, and do you have a follow up appointment scheduled?

The links Lisa provided are helpful, as well as www.celiacdiseasecenter.columbia and www.celiacdisease.net.

Lisa Mentor

Unfortunately Celiac can be very complicated in the beginning. Not only do you need to be cautious with food, but cross contaminations is a very real issue.

Shared toasters, scratched pots and pans, meds, vitamins, lotions all need to be free of gluten.

Heat Newbie
For children, it can take anywhere from a couple of weeks to a couple of months to recover. It can take longer, but often that is in adults who have had undiagnosed Celiac for a long time.

The villi damage will need to heal, and her body will need to start properly absorbing nutrients again, as well. Its a slow but steady process, with bumps along the way, but overall should be a positive, upward trend. Unfortunately it isn't ask simple as taking out gluten and magically being 'all better' - if only!!

Do you have a helpful doctor? Has he provided you with any guidance, and do you have a follow up appointment scheduled?

The links Lisa provided are helpful, as well as www.celiacdiseasecenter.columbia and www.celiacdisease.net.

Yes we do have a helpful doctor, just waiting on the final results of the tests, should know the results within a few days. Thanks for the websites


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Heat Newbie
Unfortunately Celiac can be very complicated in the beginning. Not only do you need to be cautious with food, but cross contaminations is a very real issue.

Shared toasters, scratched pots and pans, meds, vitamins, lotions all need to be free of gluten.

Thanks momma goose for all the infomation will come in handy, never knew so many other people were dealing with this.

happygirl Collaborator

Heat - more than 3 million have Celiac. 97% are undiagnosed/don't know they have Celiac. Celiac is much more common than many of the diseases Americans know about. For some statistics, see: https://www.celiac.com/articles/1164/1/Celi...tics/Page1.html

Luckily, it is garnering much more attention, both in the medical community and the popular press. And, companies/food manufacturers are taking note, and making better and more readily available food choices. It is still an uphill battle, but many strides have been made to bring us where we are in 2009.

dilettantesteph Collaborator

My son took about 2 months to get back to normal. Until then he was on a special diet because GERD was one of his symptoms. No dairy, fatty foods, tomatoes, carbonated drinks, berries, citrus, chocolate, Those things all make GERD worse. Also lots of celiacs are lactose intolerant at first. He was able to add things gradually as he improved. BioK made a big difference. It we forgot to have it one day we could really tell, he would get so much sicker again. Get the dairy one though, the non dairy one is horrible and the lactose is digested by the probiotics. Gentle tummy rubbing is soothing.

One big problem we had at first was that some "gluten free" foods were making him sick. Watch for labels that state "processed in a facility that also processes wheat". You might want to try these after healing, but stay on the safe side for now. I try to add new foods one at a time so if there is a problem, I can know what caused it. He tends to say that he isn't sick when it is clear to me that he is. Stoic, I guess, but it makes it harder to watch his diet.

It is a process, Don't beat yourself up when you make mistakes.

dilettantesteph Collaborator

Sorry, I forgot to mention that my son was 10 when he was diagnosed.

luvthelake21 Rookie

Hey Heat Welcome to the forum. You have found the right place to learn. My daughter was 10 when she was diagnosed. She is now 12. We have finally have got to where we really understand what to feed her. I still do not understand how to get all of her vitamins and minerals back in her but we learning.

Heat Newbie
My son took about 2 months to get back to normal. Until then he was on a special diet because GERD was one of his symptoms. No dairy, fatty foods, tomatoes, carbonated drinks, berries, citrus, chocolate, Those things all make GERD worse. Also lots of celiacs are lactose intolerant at first. He was able to add things gradually as he improved. BioK made a big difference. It we forgot to have it one day we could really tell, he would get so much sicker again. Get the dairy one though, the non dairy one is horrible and the lactose is digested by the probiotics. Gentle tummy rubbing is soothing.

One big problem we had at first was that some "gluten free" foods were making him sick. Watch for labels that state "processed in a facility that also processes wheat". You might want to try these after healing, but stay on the safe side for now. I try to add new foods one at a time so if there is a problem, I can know what caused it. He tends to say that he isn't sick when it is clear to me that he is. Stoic, I guess, but it makes it harder to watch his diet.

It is a process, Don't beat yourself up when you make mistakes.

Thanks very much for your reply, can you please tell me what is BioK?

YoloGx Rookie

Everyone here is right, often one is allergic or sensitive to other foods with celiac, especially at first. Milk products are the worst at first although live yogurt is often OK and, for most, good after the first month or so at least. Basic foods like fresh cooked vegetables, some meat and root vegetables and brown rice are usually better tolerated than anything else. Potatoes, peppers and tomatoes may or may not be OK. Nuts may still be too irritating, especially at first. Ancient grains such as teff, amaranth and quinoa are often well tolerated. Make sure they are packaged without CC (i.e., labeled gluten free).

As previously mentioned, its also important to avoid CC (cross contamination) with glutenous items whether its something that previously held gluten or someone put a piece of bread on her plate or on the counter where her food was prepared or if something was made with hands that weren't washed after touching gluten or breathing in gluten dust from someone baking a wheat based pie or cake etc. Washing hands before eating becomes very important.

Also avoid glue in any form; if it has to be used (like stamps and envelopes or scotch tape) be certain to have her wash her hands after with this also and not put her hands in her mouth. Also avoid finger paints (they are made with gluten).

Peppermint and chamomile tea will help soothe her belly, as will marshmallow root and slippery elm caps--these last two will help heal the villi faster. Baking soda will help soothe her belly too if she has eaten something that doesn't agree with her.

B vitamin complex (gluten free of course) and enterically coated acidophilus as well as a basic gluten-free enzyme mix with pancreatin and possibly bromelain/papain will strengthen her intestines plus help her digest carbohydrates and proteins better. Vitamin D and A are also pretty essential as are basic minerals (calcium, magnesium, zinc plus trace minerals) due to poor absorption problems left over from the celiac. Taking Bragg's or some other raw Apple Cider vinegar with her minerals will help her absorb them better I have found (after hearing about it from others).

Good luck! It is so great you have a good, conscientious, up to date doc! And welcome to the Forum!

Bea

Fiddle-Faddle Community Regular

It took most of us on this board MONTHS to really figure out which foods have "hidden" (as in, not obvious) gluten.

Here is a list of common foods that we never thought would have gluten, but DO:

1) Soy sauce (most varieties contain wheat! LaChoy and San-J Wheat-free Tamari are safe)

2) Rice Krispies and Corn Flakes (contain barley malt)

3) Oats (usually grown on same fields as wheat, so contains some gluten by cc; also, many celiacs can't tolerate oat protein because it is molecularly similar to gluten)

4) Rotisserie chicken (Many marinated in gluteny soy sauce; Costco is safe, Sam's Club is NOT)

5) Deli tuna/chicken salad (frequently contains bread crumbs as filler; chicken salad made from rotisserie chicken, marinated in soy sauce)

6) "Lite" ice creams (thickened with wheat starch)

7) many brands of chips (contain wheat or wheat starch)

8) restaurant-prepared fish or chicken breast (usually dredged in flour before frying; also, sauces are almost always thickened with flour)

9) Quaker rice cakes (:() Prepared on shared equipment with wheat--MANY celiacs report reacting to these

10) Rice Dream brand rice milk (yes, it SAYS gluten-free on the package, but it's processed with barley enzymes, which means it's NOT. The law allows them to call it gluten-free if it's less than 200 ppm, which is more than enough to cause a reaction.

11) Some deli meats (check the label to be sure)

12) Spelt (despite the claims of many health-food stores, spelt IS wheat, albeit an ancient form. It has less gluten than modern wheat, but DOES have gluten.)

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