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Blood Test And Endoscopy


Runner1978

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Runner1978 Rookie

In September, my blood tests were conflicting. One was positive for celiac, the other (apparently the more accurate) was negative. I believe I had a 5 on that one. I've been gluten free for two months. The diarhea has gone away, for the most part, I'm no longer nauseous and I do look healthier. That being said, I have alot of acid reflux and severe abdominal cramps every second day or so despite being gluten-free. So I saw a specialist who says I may or may not have celiac, I may just be gluten intolerant. He also says I may have crohns. My family doctor had tested me for crohns with a blood test and it came back negative. That said, the specialist says there is no blood test for crohns. So now I'm quite worried. I've started eating gluten again in preparation for an endoscopy. So far, I sill feel ok. I sometimes feel nauseoous but it's difficult to tell if these symptoms are real or imagined as I'd really rather have celiac than crohns.

My main frustration is that I can't get a straight answer. I'm not exactly sure what I'm asking with this post. Perhaps a bit of guidance on my positive/negative blood test.


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BRob66 Rookie
In September, my blood tests were conflicting. One was positive for celiac, the other (apparently the more accurate) was negative. I believe I had a 5 on that one. I've been gluten free for two months. The diarhea has gone away, for the most part, I'm no longer nauseous and I do look healthier. That being said, I have alot of acid reflux and severe abdominal cramps every second day or so despite being gluten-free. So I saw a specialist who says I may or may not have celiac, I may just be gluten intolerant. He also says I may have crohns. My family doctor had tested me for crohns with a blood test and it came back negative. That said, the specialist says there is no blood test for crohns. So now I'm quite worried. I've started eating gluten again in preparation for an endoscopy. So far, I sill feel ok. I sometimes feel nauseoous but it's difficult to tell if these symptoms are real or imagined as I'd really rather have celiac than crohns.

My main frustration is that I can't get a straight answer. I'm not exactly sure what I'm asking with this post. Perhaps a bit of guidance on my positive/negative blood test.

My naturopathic doctor did a blood test,,allergy testing and a saliva test. In my opinion medical doctors don't test for this enough. they usually do the small bowel biopsy,,but I have been told that if you are off gluten/wheat for a while the tests can be negative and conflicting. In the past I was diagnosed with IBS,depression,and environmental allergies. also the villi in the small bowel can be damaged and you can have other food related reactions. i am currently soy free,egg free and dairy free. I also hear some of the syptoms are like crohn's disease and that if untreated celiacs can cause crohns. good luck

Fiddle-Faddle Community Regular

If you have been gluten-free for 2 months, you will need to eat a LOT of gluten for 3 months in order to damage your villi (which healed in those 2 gluten-free months) enough to have a positive biopsy result.

There has been a lot of talk lately about the problems with biopsy--I hope you can find all the discussion on some of the other recent threads on this board! But biopsy is NOT a reliable way to rule out celiac, as there is the potential for a huge possibility of false negatives. This is especially true if you have already been off gluten for more than a month.

happygirl Collaborator

However, if your doctor takes multiple biopsies from multiple places, it increases the possibility of an accurate biopsy reading.

I would recommend that before/at the time of the biopsy (since you are eating gluten again), to have the full Celiac blood panel run. It involves five tests:

AGA IgA

AGA IgG

EMA IgA

tTG IgA

Total IgA.

This way you'll have the biopsy and the full Celiac bloodwork run to help in making an educated decision. Best of luck.

Runner1978 Rookie

If I understand correctly, the blood tests are to identify anti-bodies related to the disease. How can one test be positive without meaning I have it?

happygirl Collaborator

There are different tests in the Celiac blood panel and none of them, individually, are 100% sensitive and 100% specific to Celiac. That is why they recommend the full panel.

While the severity of the damage is often correlated to parts of the Celiac panel (I forget if it is EMA or tTG), you can still have a negative blood test and be positive on biopsy, and vice versa.

If you post the names of the tests, the score, and the range, we can help interpret.

  • 6 months later...
kifert Newbie

my blood tests for celiac came back fine, but my gastroenterologist wants to do an endoscopy while she's got me there for the colonoscopy...My daughter has celiac, but I have no symptoms. does doing the endoscopy make sense?


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aikiducky Apprentice

Kifert, absolutely it makes sense, especially if you're going to be having a colonoscopy anyway. Bloodtests aren't all that reliable, they are only reliably positive in people who have extensive damage to their intestines. If you are in the earlier stages of celiac your blood test might be a false negative but the endoscopy might find some damage. Ask them to take plenty of samples though, because just a couple of samples might miss damage if it's spotty.

Pauliina

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    • marion wheaton
      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
      @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
      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
      @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
      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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