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Excess Stomach Acid


raen

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raen Apprentice

my brother was tested for celiac.. and it came back negative in both blood and endoscopy.

they still think he has it, because i do, our symptoms nearly match, and they tested him for everything else under the sun. he was only been having symptoms for 5 months (though debilitating symptoms) when he got tested, and had been semi-gluten-free for two months before the test.

partly because it was negative, our mother thinks its okay to give him gluten in small amounts, with the stated reasoning, "everyone dies sometime, anyway." first - isn't that child abuse or neglect somehow?? feeding your kid what you suspect will not only make him so sick he can't even move, short-term, but long-term lead to an early slow painful death? just becuase its easier!

second, she is obsessed with the doctors saying he has "excess stomach acid." whenever his stomach has spells of pain after eating gluten, they tell him to take stomach acid reducing medicine.. and that medicine makes him dizzy, but shortens the pains. everyone is a little worried about him taking medicine that makes him feel so dizzy though, they are afraid to take him off it because he keeps getting stomach pains, because she keeps giving him gluten!

can celiac cause excess stomach acid, and is there anything i can do to stop her from glutening my brother?


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ShayFL Enthusiast

Sadly, if the doctors have not Dx Celiac, there is no reason that legally she cannot feed him gluten. Sorry you are having to deal with this.

Celiac usually causes "low stomach" acid. But could cause the reverse. What most people call acid indigestion is usually a sign of "too little" stomach acid. That is why TUMS just makes it worse over time.

raen Apprentice

what if the child is keeping a food diary that proves his symptoms occur every time he eats gluten, combined with doctors' opinion, and having at least 1 if not multiple first degree relatives with celiac, enough evidence to be considered relatively equal to a positive test?

at the very least, the food diary proves gluten makes him incredibly ill, whether or not that's considered proof of celiac, isn't it still considered abuse, neglect, negligence?

SGWhiskers Collaborator
my brother was tested for celiac.. and it came back negative in both blood and endoscopy.

they still think he has it, ...and had been semi-gluten-free for two months before the test.

Who is they? I know you, but the doctors too? Have they diagnosed him? Did they do a total IgA? Look at the interpreting test results section of the main Celiac.com page. It explains that one more.

Does your family already have a protective services social worker working with you? This is far more than you should have to deal with. Your brother as well. If it is Celiac, then in a couple of years, he will be able to manage it better himself. I hate to see him have to wait that long. I don't know if a food diary would help with a protective services case, but it may just help your mother see the connection between gluten and his symptoms. That really is all you want in the end. Alternatively, maybe you can talk her into putting your brother back on a full gluten diet for a while and having the blood test redone. Maybe you can go along to the next doctor's appointment and share what you see with your brother's reaction to gluten. The doc may want to do some retesting. Or, maybe you can show him the food diary. I wonder if cooking would be easier on your mother if the whole house was gluten free. (I assume you live at home). I also assume little brother has been tested for food allergies.

Good luck. You are a very caring older sister.

raen Apprentice

my plan is to talk to my brother, if i can ever get him alone.. because she doesnt cook, she does whats easiest NOT best time and time again (not that she doesn't love her kids, shes just irresponcible and self-absorbed) and saddly i live very far away from home.

he has SUCH bad symptoms, that i know he will do whatever it takes to be healthy again, and he takes things like developing diabetes, cancer, thyroid problems, etc very seriously, sense his grandma died of stomach cancer and our grandpa has diabetes (both sides of the family seem to be celiac)

my only fear, is that she and other adults may try to give this little boy things containing or contaminated with gluten out of laziness.. and i'm too far away to keep an eye on this!

maybe say something like.. "eating gluten/dairy an adult offers you when your hungry, is like a thirsty person drinking sea water, it will only make you MORE starved/sick, even if it LOOKS like food."

they wont talk to me much about his testing, they just give me the vuege crap "its all in the normal range - he has no diseases, infections, etc" because they are STILL not used to the confirmation that i was never a hypochondria- but i have talked my mom into getting him a saliva test, and wheat allergy test, and i am insisting they bring me along.

ravenwoodglass Mentor
my plan is to talk to my brother, if i can ever get him alone.. because she doesnt cook, she does whats easiest NOT best time and time again (not that she doesn't love her kids, shes just irresponcible and self-absorbed) and saddly i live very far away from home.

he has SUCH bad symptoms, that i know he will do whatever it takes to be healthy again, and he takes things like developing diabetes, cancer, thyroid problems, etc very seriously, sense his grandma died of stomach cancer and our grandpa has diabetes (both sides of the family seem to be celiac)

my only fear, is that she and other adults may try to give this little boy things containing or contaminated with gluten out of laziness.. and i'm too far away to keep an eye on this!

maybe say something like.. "eating gluten/dairy an adult offers you when your hungry, is like a thirsty person drinking sea water, it will only make you MORE starved/sick, even if it LOOKS like food."

they wont talk to me much about his testing, they just give me the vuege crap "its all in the normal range - he has no diseases, infections, etc" because they are STILL not used to the confirmation that i was never a hypochondria- but i have talked my mom into getting him a saliva test, and wheat allergy test, and i am insisting they bring me along.

Your plan is a good one, your little brother is the one who is ultimately going to have to deal with saying no if stuff is not safe. Don't sell him short, educate him and give him the tools he needs to make a good decision on his own. He now knows that gluten is going to make him sick and he is the one who is going to have to be responsible for what goes into his body.

I would strongly advise that you NOT contact social services or child protective services. To pull them in may cause repercussions that you really don't want. If CPS does decide that perhaps your Mom is not as careful as needed do you really want to see you little bro in a foster home? They may know even less than she does and that also will cause emotional damage far beyond what glutenings will. And guess who the family, including your little brother will blame, you. Do you really want to tear your family apart in a way that will likely have your little brother hating you for the rest of your life?

How about having your little brother come and stay with you during vacations and holidays? That would enable you to teach him what he needs to know. You could have fun teaching him how to cook a few meals that he could then cook for he family when he gets back home. When he goes home he would have the knowledge he needs to keep himself safe.

GlutenWrangler Contributor

Child protective services wouldn't remove him from the home on the first call. It would take multiple calls and evidence for that to happen. If you truly feel like it's a serious enough issue that you need to call CPS, don't hesitate to do so. You have to go with your gut on this. Nobody on this forum can really tell you what to do in this situation. Ultimately, it's your family, and your little brother's health. So follow your instincts and do what you think is best. But I think it's a good idea for you explore other avenues first...Talking to your brother about it just might be enough to solve the problem. I wish you the best of luck on this whole issue. I'm so sorry that you are in such a tough situation. Take care,

-Brian


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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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    • 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!
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    • 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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