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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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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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