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Probable Celiac - Need Help With Questions For Gi Guy On Fri.

GFPamela

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GFPamela Newbie
GFPamela
Posted

Went gluten free 2 yrs ago without a diagnosis. Now I'm not willing to do a gluten challenge as symptoms are too severe (IBS, severe gas, etc). My sister was diagnosed in infancy. But the doctors then thought she'd outgrow it and so she suffered a lot of damage until she went back on a gluten free diet as a young adult. I see a GI guy in a few days. I'm wondering what questions to ask and what to expect. Really would like genetic testing since my most of my other 6 siblings are having problems but are in denial and few believe I could also have celiac disease. What are you all seeing out there? Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

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Roda Rising Star
Roda
Posted
Do doctors sometimes agree to genetic testing in a case like mine? Paying out of pocket is not an option. Thanks for any help you can give.

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing. I would like to have the genetic testing done just to see what genes I do have, but my insurance won't pay for it. I don't want to foot the whole bill since I am already diagnosed by blood work and biopsy just for curiosity sake. I do think if I knew what genes I had I could potentially use it to help my brother and father to get tested( They both refuse and have symptoms). I have not had my two boys genetic tested either for the same reason. I have had them both screened, although it was not a complete pannel. One of mine I am a little suspicious and probably will undergo more blood work on him soon. I hope you get the answers you need.

ravenwoodglass Mentor
ravenwoodglass
Posted

This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

GFPamela Newbie
GFPamela
Posted
  • Author
This is a tough one, not trying to answer it but what I think he is going to say. I would expect he is going to want you to go back on gluten for testing. Whether your insurance company will want to pay for genetic testing is a good question. Insurance companies can be real tough to deal with. They may want to see a blood test and biopsy done first. It is possible that he will diagnose based on family history and the resolution of your problems once you went on the diet. It would be helpful if you can bring in copies of your medical history from before and after you started the diet.

I don't know what your copays are but in the long run it may amount to more than getting gene testing done on your own. Enterolab would be one place to check for independant genetic testing and they test for more than just the 2 genes that most doctors test for. Gene testing can't diagnose you, it can tell you what genes you have and is sometimes a valuable component in the diagnostic process but a lot of folks carry the genes without developing celiac.

Doctors do advise testing of all first degree relatives once one person in a family is diagnosed. That said you can not force them to test. You can find that info on the net on sites like the NIH's celiac awareness campaign and many other medical sites. Perhaps if you print out some info from that type of site your other family members might listen and get tested.

Yes, thanks. I'll see what he has to say tomorrow. My gene testing would be more helpful to my family than me because I'm already convinced. I'll have to keep working on them. I wish doctors would test right away rather than tell people (like me) to try a gluten-free diet and see if problems are resolved.

GFPamela Newbie
GFPamela
Posted
  • Author

I'm sure the doctor could order the genetic testing, but you may want to contact your insurance carrier before hand, since some do not cover genetic testing.

Thanks for the info. I'll call them today. I don't want to go in to the appointment blind.

BettyinMD Newbie
BettyinMD
Posted

Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

GFPamela Newbie
GFPamela
Posted
  • Author
Thats interesting that your sister was diagnosed as an infant! Same thing happened to me, and my mom was told I would 'grow out of it.'

Good luck tomorrow!

Yes, she ended up with ulcerative colitis, stunted growth, is sterile and now osterporosis and diabetes! But she deals with it all very well. Now I have to learn from her; she's very strict with her diet and I have to watch better for that hidden gluten.

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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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