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Need Some Advice

ckmom

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ckmom Rookie
ckmom
Posted

First I want to thank this board! I have read so much helpful info, it's the main place that truly gets me thru.

Well, my 6 yr old daughter was dx. about 4 months ago. We have been doing very well, her stomach aches almost stopped immediately. Now, she has been complaining again of stomach aches. I don't know if it truly has anything to do with her celiac or not. She doesn't complain if she is doing something she wants to be doing or if she is busy and doesn't think about it! I really don't know what to think or do!? My husband thinks we should take her back to the Dr. but I just don't know if that's the answer. I feel like I am at a complete loss . . . I am trying so hard to make this transition easy for her by baking/cooking all of her old favorites gluten free which, the majority of them she enjoys. I am really feeling low and sorry for her and I don't know what to do. If anyone has any ideas please let me know - I take all of this advice to heart.

Thank You all in advance!!

Kelly

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CarlaB Enthusiast
CarlaB
Posted

With kids it is difficult to tell whether they really hurt or whether they are making it up for some other reason. What I do is tell them if they feel bad they should go lay down (and I make them do it) ... if they really feel bad, then they are happy to, but if they don't, all of a sudden they feel better.

Since your daughter feels fine when she's busy, I am wondering if she just misses the attention she got when she was ill. If so, the above should work because going to lay down is the opposite of getting attention.

If she does really seem to hurt, keeping a food diary might help. Sometimes other food allergies/intolerances show up after going gluten-free, so it really could be something else bothering her ... but I'd try to find out if it's real or for attention before you drag her to the doctor or put her on an elimination diet ... it should only take a few days to find out.

ckmom Rookie
ckmom
Posted
  • Author
With kids it is difficult to tell whether they really hurt or whether they are making it up for some other reason. What I do is tell them if they feel bad they should go lay down (and I make them do it) ... if they really feel bad, then they are happy to, but if they don't, all of a sudden they feel better.

Since your daughter feels fine when she's busy, I am wondering if she just misses the attention she got when she was ill. If so, the above should work because going to lay down is the opposite of getting attention.

If she does really seem to hurt, keeping a food diary might help. Sometimes other food allergies/intolerances show up after going gluten-free, so it really could be something else bothering her ... but I'd try to find out if it's real or for attention before you drag her to the doctor or put her on an elimination diet ... it should only take a few days to find out.

Thank You so much that sounds like a great idea. I actually already have a book to keep the food diary in. Making her lay down for a while does make sense. (Then I'll have another problem on my hands if this is for attention!)

Nic Collaborator
Nic
Posted

It's funny because we actually have the opposite problem. My son won't admit when something hurts. So we never know for sure when he is sick or when he is feeling better. But Carla's idea sounds like a good one.

Nicole

debmom Newbie
debmom
Posted

Aside from the possibility of hidden gluten (toothpaste?) could she have established a pattern of receiving attention when her stomach hurt? And now she uses that to gain attention when she is bored or needing some parent time?

My daughter and I developed a different relationship when she was sick and in pain all the time. We had to reestablish a new way of relating once she felt better. I had to find something to do with all the time I used to spend worrying about her! and I still was smothering her with attention when she really needed to have some independence once she felt better. (She is 15) But a sick child does create a different dynamic and maybe your daughter is also having trouble adjusting to a new one now that she is better. I'd check with the doctor though and let her know when the stomach aches seem to reappear. I'd keep a chart and see if there is a pattern to them (note what is going on in the family when they appear--). I like the idea of asking her to go lie down.

Good luck--

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    • Mari
      My only proof

      By Mari · Posted

      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Are Lindt chocolate balls gluten free?

      By marion wheaton · Posted

      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
      Are Lindt chocolate balls gluten free?

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      @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
      Are Lindt chocolate balls gluten free?

      By BlessedinBoston · Posted

      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
      My only proof

      By knitty kitty · Posted

      @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!
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