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Glutenizing...


shaleen

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shaleen Rookie

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!


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Dixiebell Contributor

I would call it torture. Did your doc tell you to take him off gluten before the endo ? I bet if that doc was having problems, he wouldn't go back to eating gluten. Are you wanting the endo to see if maybe something else could be going on too? If not, if it was me having to make that decision, I would keep him gluten free. Keeping him gluten free will not mask other problems he might still be having or may have in the future. My son is 9 and we decided to try the diet instead of the endo because the tests can miss the damaged areas or there might not be enough damage to start with. His blood tests were negative too. Best wishes.

SGWhiskers Collaborator

I'm not a mamma yet, but I wouldn't put a developing child on gluten or through the endoscopy just for the label. Why did the doc say he/she wanted the endo done? Are they looking for confirmation, or suspicious of something more. Just because medicine CAN do something, does not mean that it SHOULD do it. With that said, there may be very good reasons for doing the test now.

MacieMay Explorer

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

I feel your pain. I just went through it. It's heartbreaking to give your child something that you know could be causing them harm. But...if you think he has celiac then he has to be on the gluten for you to get the diagnosis. He is young and any damage done to his small intestine will surely heal and he will be OK. The antihistamine will help with rashes. It is very difficult to diagnosis kids under two because they have not consumed enough gluten to cause extensive damage or built up enough antibodies in the blood to show up in blood work. I believe my 18 mos daughter has DH, her rash is not responding to antihistamines, hydrocortisone, or moisturizer. It has all the typical characteristics of DH. A few weeks back she had a endo and a colon( to rule out hidden food allergies ) and everything has come back negative (including two celiac panels). I had her on and off the Gluten before hand, eventhough I knew for test purposes she should be on. But her skin was getting so bad, I just couldn't bare to see it.

Try to take it one day at a time. Down the road you will be thankful that you have a correct diagnosis. I hope this helps.

my3monkees Rookie

If you know your child reacts to gluten. I wouldn't put him thru 2 months of torture. He is too young to even understand why he feels so bad. My then 11 yr. old said she would starve herself before she would go back to eating gluten, so ped. and I agreed an official diagnoses wasn't necessary, it wasn't going to change anything. Official diagnosis or not, she can't eat gluten. As she gets older, if she wants an official diagnoses, she can make that decision. HTH Wish you well!

THernandez Newbie

Not sure if that is what you would call it but I just got back from the GI doc who wants me to put my 18 month old back on gluten for 2 months before they'll do the endoscopy. I was wondering how I'm going to deal with all the ill side effects he gets for a whole 2 months!!! Any help would be appreciated...he usually gets diarrhea and mad rashes. Plus they are putting him on a antihistamine to increase his appetite!

Yeah, you know what? They wanted me to do that with my son too and I said no freaking way! My kid was so sick when he was on gluten that I wasn't even going to consider it. Her reasoning was that without the biopsy (which in itself seemed like a tortuous thing to do to a toddler) I couldn't get a definitive diagnosis. My question to her was, if the gluten-free diet made every symptom go away, what good is a definitive diagnosis. She said, "So you can write off the difference in the price of gluten-free food off your taxes." Seriously, that was the best reason she could offer me to put my kid on gluten. I never went back to see the pediatric GI again.

As far as the antihistamine goes, it does the opposite to me, it decreases my appetite. That seems kind of odd to me.

shaleen Rookie

So yes, I think the pediatrician is deciding to call it a day with my little one. He has rashes covering his arms and legs...just 3 days after starting the gluten. He just started with an ear infection and has been smashing his head on anything and everything. If this continues, she said to discontinue the gluten on Thursday of this week. THanks for everyone's comments and help on my LO!


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SGWhiskers Collaborator

Get him to a good dermatologist and have those rashes biopsied for DH. I think they have to do just outside or the edges of the rash. DH is as good as a celiac diagnosis. Go to the DH part of this forum and I suspect you will find the information you need. A little skin biopsy is nothing compared to 2 months of gluten and an intestinal biopsy. Consider the rash an easy way out of your dilemma. As a bonus, if it is DH, the rash will serve as a good motivator in the teenage years for staying gluten free.

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    • 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. 
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      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 
    • marion wheaton
      Wondering if anyone knows whether Lindt chocolate balls are gluten free. The Lindt Canadian website says yes but the Lindt USA website says no. The information is a bit confusing.
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