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Blood Tests Came Back Normal!

speedy2056

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speedy2056 Apprentice
speedy2056
Posted

I just got my blood test results for celiac disease, random sugars, infections and wheat intolerance and they came back normal! I was told quickly over the phone when I called to see if they had the results in.

I'm so convinced that I have either wheat/gluten intolerance or celiac!! There is a big difference in both my personality and physical side when I eat gluten/wheat.

I have booked an appointment to see my doctor tomorrow and I am going to request the results to see for myself. How common are false negatives? I thought they were more common in children. I did go off wheat/gluten a couple of days before the test, but it was only around two-three days in total because I didn't know that you needed to be consuming wheat /gluten for the test.

I've just lied to my family saying that the tests claimed that I have a wheat/gluten intolerance. I didn't bring up the issue of celiac disease, but at least I convinced them to make my life much easier. They are by the book when it comes to test results stating something and are not open minded about the possibility of them being inaccurate.

I was thinking about asking the doctor for an endoscopy but that means that I have to eat gluten again and I really don't want to be going through all that once more.

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lovegrov Collaborator
lovegrov
Posted

False negatives are not unusual, although more common in really young kids. HOWEVER, if you had been gluten-free for a while an then ate gluten for just 2-3 days, the possibility of a false negative goes way up. Your test was pretty much useless for determining whether or not you have celiac.

richard

sa1937 Community Regular
sa1937
Posted

False negatives are fairly common on both the celiac panel and the endoscopy/biopsy (yes, even for adults). With a positive response to the diet, I think you have your answer. And whether you have celiac or an intolerance to gluten, the diet is the same.

It is good to pick up copies of all your test results and keep on file. I wouldn't show them to your family though if they're such by-the-book skeptics. :P

speedy2056 Apprentice
speedy2056
Posted
  • Author

I had only been off wheat/gluten for two to three days, but other than that I had been consuming it normally. It was only that two-three day break, but perhaps even going for that such short period of time could have affected it, maybe? Not sure. I did have a large pizza with a lot of gluten side extras to gluten myself up the day before the test. Oh, well, who knows, huh?

Yeah, I won't be showing the results to my family, lol, but I do feel a bit guilty for lying. I guess if it makes my life easier then I had to. If I get a copy of the tests then I'll be sure to let everyone here know what they say. I heard that just even one particular ig thing had to be off to make me borderline celiac, and that not many doctors know how to read celiac results properly.

kareng Grand Master
kareng
Posted

I had only been off wheat/gluten for two to three days, but other than that I had been consuming it normally. It was only that two-three day break, but perhaps even going for that such short period of time could have affected it, maybe? Not sure. I did have a large pizza with a lot of gluten side extras to gluten myself up the day before the test. Oh, well, who knows, huh?

Yeah, I won't be showing the results to my family, lol, but I do feel a bit guilty for lying. I guess if it makes my life easier then I had to. If I get a copy of the tests then I'll be sure to let everyone here know what they say. I heard that just even one particular ig thing had to be off to make me borderline celiac, and that not many doctors know how to read celiac results properly.

Don't feel bad. The blood tests are for Celiac Disease. That is different from gluten intolerance. The main way, right now, to test for gluten intolerance is to stop eating it & see if you feel better. You feel better off gluten? Then the "test" results are psotitive. There just not blood tests.

speedy2056 Apprentice
speedy2056
Posted
  • Author

Don't feel bad. The blood tests are for Celiac Disease. That is different from gluten intolerance. The main way, right now, to test for gluten intolerance is to stop eating it & see if you feel better. You feel better off gluten? Then the "test" results are psotitive. There just not blood tests.

Absolutely, I feel better. My life's changed dramatically!

Poppi Enthusiast
Poppi
Posted

Absolutely, I feel better. My life's changed dramatically!

There's your positive test results then.

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speedy2056 Apprentice
speedy2056
Posted
  • Author

Thanks for restoring faith in me, guys! :)

Jestgar Rising Star
Jestgar
Posted

Absolutely, I feel better. My life's changed dramatically!

There's your positive test results then.

Yep, you aren't lying. Food testing proved gluten intolerance.

Poppi Enthusiast
Poppi
Posted

Yep, you aren't lying. Food testing proved gluten intolerance.

I wouldn't even give as much detail to people. Just say "Yes, I tested positive for celiac".

I never had any testing because I went gluten free before I knew you had to be on gluten to get tested. After 6 weeks I decided that it would be good to get tested. My gluten challenge lasted half a day and I was miserable. It took almost 3 weeks to feel great again. So I know for sure I have a gluten intolerance, in fact I have been glutened by such trace amounts that I know I have a very severe gluten intolerance. I won't ever know for sure if I have actual Celiac but I tell people I do because they take celiac more seriously than an intolerance.

Skylark Collaborator
Skylark
Posted

Yep. There is no test more accurate than an elimination diet for non-celiac gluten intolerance. Glad you figured it out and are feeling better.

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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.
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    • 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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