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I've Been Told Diff Things By Diff Doctors!

willamina

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willamina Apprentice
willamina
Posted

What do I do?

What are the NORMAL symptoms of gluten intolerance?

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tarnalberry Community Regular
tarnalberry
Posted

Lol! That's a question without an answer. Or rather, it has a really long answer with a lot of different things. Not to mention that a LOT of celiacs do not have normal symptoms. (I didn't.) While weight loss and diarreah and abdominal pain are listed as common symptoms, some people have no physical symptoms and just mental ones (brain fog, irritability, etc), and some people have the opposite symptoms (weight gain, constipation, etc).

Have you been tested? If so, what tests? Have you tried going gluten-free? Did that make any difference? Do you have family members with celiac or IBS or other digestive issues?

Guest jhmom
Guest jhmom
Posted

There are many symptoms of Celiac Disease, in fact over 200 of them. Here is a link to a list of symptoms located on this website click Here for the list. There are also other symptoms that are not listed, each person is different. Some people have this diease and severe symptoms and some don't have any GI problems at all, maybe just anemia.

If you don't mind maybe you should give us a little more info about yourself for example, have you been tested, what kind of symptoms are you experiencing, if any?

I hope this link helps....

YankeeDB Contributor
YankeeDB
Posted

I wonder if all the different symptoms related to WHICH part of the small intestine is damaged. Perhaps different sections absorb different nutrients and that is a factor. My primary debilitating symptom was ever-increasing fatigue. A blood test showed B12 deficiency (but not iron deficiency) and I understand B12 is absorbed in the lower intestine (ileum). I also had mild-moderate steatorrhea but otherwise OK bowels. Oh, I think I had DH but that was "cured" symptomatically with cortizone cream and I regarded it as so trivial that I never mentioned it to my doctor.

The never-ending saga......

seeking-wholeness Explorer
seeking-wholeness
Posted

YankeeDB,

Vitamin B-12 can only be absorbed at all if sufficient levels of "intrinsic factor" are present in the stomach to convert it into a form that is usable by the body. If B-12 supplementation is necessary, methylcobalamin is preferred because it is already the "active" form of the vitamin. Cyanocobalamin, while more common and less expensive, has to be converted by the body and is useless if the conversion mechanism is defective. I just thought you might find this interesting. I hope you're doing well!

YankeeDB Contributor
YankeeDB
Posted

Sarah,

Thanks so much for your informed response. My intrinsic factor was OK, according to my doctor. Since the b12 problem was discovered, first I received monthly shots (1000mcg) and now I'm taking the sublingual form (1000mcg daily) of the supplement to bypass my battle-weary digestive track. My B12 levels are good now and I've used both methyl- and cyano- forms at different times so at least something is going right.

I'm still wondering if pancreatic insufficiency (another potential factor underlying b12 problems) may be at issue.

Quite a tangled (but interesting) web.

I'm just on the first steps of gluten freedom and have lots to learn and figure out.

Ann

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    • 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?

      By trents · Posted

      @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!
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      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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