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Maybe Maybe Not I Don't Know

Mickey222222

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Mickey222222 Newbie
Mickey222222
Posted

Hi I'm new my big question is do I or dont I. I had big blood work done in sept. like 5,000$ in one bill this is a test for all kinds of things allergies Lyme ciliac and many others. In oct my results were back I have a wheat allergy and my TTG Igg was a 13 and my TTG Iga was a 14 the range is o-7 so he said I have ciliac and a wheat allergy. Stay away from wheat. That was it pay me now and bye. I have not had any gluten for the 3 months . He tested again just after Christmas I went yesterday. I have no wheat allergy now. duh it's from no wheat in my diet right? I also have been low vtiman D for years now 50,000 once per week for at least 3 years .and low fish oil 4 per day now found that out from another big $ cardiac blood work. And also low calcium now also two pills per day. Now he says I'm intolerant I have had symtoms for years 4 years ago went had endo and colonoscopy he said no ciliac. Told my doc I had been tested and they said no back then. My doc now said test is much more sensitive now. I think he can't keep his patients straight to many on his plate. I don't know I am or I'm not I have had to find everything out on my own no help from my doc . Thanks to people like you and the Internet I'm doing good with the gluten free.

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mushroom Proficient
mushroom
Posted

Hi Mickey, and welcome. Glad to hear you have been reading, if not posting before.

If your doctor now says you are not celiac because you no longer test positive for it because you stopped eating gluten, he is an idjit. That is what is supposed to happen when you go gluten free -- your numbers go down because you stop making antibodies to things that are not present :D Good for you! You have done a good job! (I hope I am reading your post correctly) As for wheat allergy? Did he do the skin prick test again? Or how did he test for that? Did he retest your vitamin D and calcium?

I think it is pretty clear from your October results that you ARE celiac. Don't let anyone tell you you are not.

Happyw5 Explorer
Happyw5
Posted

I have a wheat allergy, and after a year with no wheat I tested negative for a wheat allergy. They told me I could eat wheat again! So I did, I missed it alot. My symptoms became soo extreme. I stopped eating wheat again and asked about celiac, at the time I didn't understand much about it. I tested negative, but I am sure that is because I had already stopped eating wheat. I decided to go gluten free on my own about two years ago, and I would never go back, whether it is just an allergy or celiac, gluten is not for me. They did do an E95 basic food panel on me (which I believe is igg testing-like a delayed reaction) as well and my results were pretty obvious.

wheat--significant allergy-- 528 mine was 1227

gluten--significant allergy-- 363 mine was 1445

gliadin--significant allergy-- 594 mine was 1519

My dr. didn't really explain alot so I decided to become a google dr...

Mickey222222 Newbie
Mickey222222
Posted
  • Author

The allergy test was all blood it was for foods molds trees Lyme ciliac . Vit D was good in DEC

Fish oil just found out in DEC. calcium just found out DEC. I asked if vit levels were low because ciliac he said

He said no poor diet I'm not the only one a lot of people are low. Also cholesterol is on the low side like

159. He retested me for fish oil and calcium on wed. The blood work that was done one went to Virginia

And the other New Jersey they only take what insurance pays if the insurance doesn't pay you owe nothing

One is cardiac panel and the other is the allergy and other things. They take like a month for the results

to come back. One is like 5,000$ and the other 6,000 - 7,000 my doc has contract with them

mushroom Proficient
mushroom
Posted

Lots of people are low in vitamin D for several reasons: they use sunscreen all the time; they spend too much time in front of the computer and don't go out in the sun; they live in the northern latitudes where the suns rays are too slanted to create vitamin D; they don't get enough vitamin D from their foods because they eat the wrong foods; they don't get enough vitamin D from their foods because they have celiac disease. We don't know about any of the others, but we know from your September test results that you tested positive for celiac disease.

Lots of people also do not get enough of the Omega-3 (fish oil) fatty acids, EPA and DHA. You could probably say this about the entire American population because we eat too much of the Omega-6's, and these need to be kept in balance with the 3's.

Is your doctor a medical doctor, a chiropractor or a naturopath, or something else? Did he do the tests in September which came back positive for celiac, and if so what did he tell you about them then? Did he recommend a biopsy of your small intestine? Did he recommend you eat a gluten free diet?

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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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