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I Want To Get A Test Done But Im Worried ...

mr. moore

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mr. moore Explorer
mr. moore
Posted

if it comes back negative, that it was all in my head!!

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ravenwoodglass Mentor
ravenwoodglass
Posted

Tests aren't perfect and false negatives are seen but the adherence to the diet and the resolution of symptoms is also a diagnostic tool. After you have all the testing done that you choose to do a dietary trial of the gluten free diet can sometimes provide the answer.

ShayFL Enthusiast
ShayFL
Posted

That's right. I was NEG for hypothyroid for nearly 15 years (because the lab ranges were WRONG). It WAS all in my head until I showed my doctor the correct lab ranges and got treated properly (and got better).

So do not worry if you get a NEG result. Try the diet anyway. If it works for you, then you have your answer. Even if they still think it is all in your head, at least you will have a healthy head now. :)

lizard00 Enthusiast
lizard00
Posted

False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

caek-is-a-lie Explorer
caek-is-a-lie
Posted
False negatives are not uncommon, I am in that category. In fact, my doctor told me that I could be half dead and still not test positive on a celiac panel, even though I do have it.

No doctor can argue with positive dietary results.

Haha I want YOUR doctor! My doctor said via e-mail the basic equivalent of "if it hurts, don't do it" and left it at that. Testing was optional. He didn't think testing was necessary but at the same time left it up to me to figure out what to call it. Doctors confuse me. Is 4 weeks gluten free too late to do a blood test? He wouldn't say. I'll never know if I have intestinal damage. In a way I guess it doesn't really matter if the diet's working, but on the other hand I think it kind of stinks. I kind of want to know (unless it's negative and they use that to call me crazy.) You can see my dilemma and I can't seem to get a straight answer from anyone. *sigh*

LAH Newbie
LAH
Posted

I'm in the same situation as I finally realized I needed to stop eating gluten about 3 years ago but I did not have insurance so I just stopped eating gluten and started getting better. Now I wonder if I made a mistake but I can't imagine eating gluten again just to get an 'official' diagnosis. I"ve accidentally injested gluten or gluten contaminated food several times and honestly say I don't want to suffer the price just for a positve test. I talked to one woman who was DX after a 2nd enteric biopsy, apparently the first pathologist was blind or the doctor took villi from a patch of undamaged tissue but she was brave enough to go back for a second biopsy.

I've been lucky to find a nurse practitioner who has celiac disease and she told me it could be gluten intolerance or celiac disease after I described the symptoms I was exeriencing to her. I was so relieved to find someone who understood the symptoms I was experiencing and who could tell me that some people do become very sensitive to small amounts of gluten once they go on the diet.

Stay on the diet why suffer more?

mr. moore Explorer
mr. moore
Posted
  • Author

stay on the diet for sure!! ;)

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

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caek-is-a-lie Explorer
caek-is-a-lie
Posted
stay on the diet for sure!! ;)

you know its only been 2 days but i feel my vision is getting better and i don't feel as anxious. hmmm....

i wrote this in another topic but how much is enough gluten to set you off?

The tiniest little remnant of a crumb that I tried to wash off my fork with soap and lots of hot water. That's how much. (someone used my fork at work to eat cake! Ahhh the horror!!! I seized all night.)

LAH Newbie
LAH
Posted

I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free. :o:o

mr. moore Explorer
mr. moore
Posted
  • Author
I have a reaction to some products that are labeled gluten free, ex. Sams Choice from Walmart always gets me as do any type of corn or potato chip. My nurse practitioner said that some people become very sensitive to very small amounts of gluten after going on the diet and that I was probably one of those people. The gluten free label does not always mean 100% gluten free, a product can have up to, I think, 200 ppm gluten and still be labeled gluten-free. :o:o

**U(*(&(*&(*#*#**# :angry:

what?! you mean ive been eating brown rice bread that could have gluten in it? is there ANY FREAKIN way to do this diet?! what does ppm mean?

mushroom Proficient
mushroom
Posted

ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

mr. moore Explorer
mr. moore
Posted
  • Author
ppm = parts per million! But I think in the U.S. the standard is 20 ppm. The Codex Alimentarius in the UK permits them to include 200 ppm, as I understand it, which would probably be enough to set most people off from my point of view.

But I am not one of the more sensitive ones to tiny amounts and therefore engage in the "risky" behavior of eating things that are processed in the same facility or on the same lines as gluten products. Others on here would not dream of doing that.

but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

mushroom Proficient
mushroom
Posted
but i thought it doesn't matter even the tiniest amount can take me back to square one! right?

Not back to square one, exactly. Certainly gluten is to be avoided entirely to the best of one's ability, but even if you get accidentally glutened, while you will suffer and do some additional damage, you will not go all the way back to square one. What I was saying in my clumsy way was that different people have different sensitivities and food processors are allowed to claim gluten-free status in the U.S. for foods that contain less than 20 ppm. Some people will react even to these, others will not. Some are afraid to walk down the flour aisle in the supermarket; others are not that sensitive. You will have to determine your own level of sensitivity.

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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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