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Need To Be On Gluten To Have Blood Testing Done?

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RatPack Newbie
RatPack
Posted

My 19-month-old son has had frequent, loose stools and scaly rashes since I can remember. I always suspected some sort of food intolerance but wasn't incentivized to do anything until his most recent check-up showed that he went down and off his growth chart (he was under the 5% for weight and not much better for height). I decided on my own to put him on an elimination diet at the beginning of the year just to see what happened. His stools became solid and less frequent (2 a day rather than 5 a day). He also gained two pounds in 1

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Destiny Stone Rising Star
Destiny Stone
Posted

Hi, I am new to the forum,(thus the empty reply) but I work for Celiac.com & we have an autoreply that I thought would help you. For your review:

Celiac.com cannot offer any medical or dietary advice, other than to recommend that people with celiac disease should maintain a 100% gluten-free diet for life, and anyone who believes that their symptoms could be caused by celiac disease or gluten intolerance should be screened for it (we recommend that everyone be screened for celiac disease because its symptoms can range from none to almost any unexplained health problem--not to mention the fact that around 1 in 100 people actually have it and most never get diagnosed and treated).

Screening for celiac disease is a simple blood panel that includes these tests (please note that you should still be consuming gluten in order for the antibodies to be present):

Anti-endomysial antibody IgA (EMA)

Anti-reticulin antibody (ARA)

Anti-gliadin antibody IgA (AGA)f

Anti-Gliadin IgG (AGA)F

Anti-Tissue Transglutaminase (tTG) Antibodies

I hope this helps! Best wishes to you & your little guy. :)

tarnalberry Community Regular
tarnalberry
Posted

My questions for anyone out there with some knowledge of testing for celiac disease are:

1. Does my son need to go back on gluten to take the blood test? Please say no!

2. Should I have the blood test given prior to the visit with the GI?

3. Should I have him tested for the two celiac-related genes? My husband

mogal Newbie
mogal
Posted

Question for y'all.

I had the Enterolab Intolerance Test with a score of 33. My Dr., says she would like to have the celiac panel done to confirm Celiac Disease. I'm confused after reading all the posts on where to get the best test...I'm not sure how to determine that.

Quest Labs blood tests include only 3 of the 5 that you recommend. TTG, IGA and one of the Anti-Gliadin antibodies...(not sure which one). The cost is $273. I live in Kansas City and there's a Quest lab nearby.

LifeExtension Lab offers this for $99:

Deamidated gliadin IgA; tissue transglutaminase IgA; serum IgA quantitation.

Is there a better lab to get a broader spectrum panel or better pricing or ???

I'm new to all of this so not sure where to go to get the best test without breaking the bank. (limited health insurance coverage), yet still get the best panel.

Also, I have gluten-free for one month...how long do I need to be eating gluten for blood testing?

THANKS for your help.

debi

mommida Enthusiast
mommida
Posted

~You are testing for the damaging reaction for gluten in the body.

~Only have the blood test prior to the ped gastro appointment if the two doctors are on the same page and want the same panel drawn. The results should then be sent to both docs. The labs are somewhat determined by your health insurance.

~Genetic testing is still "new". Not as readily covered by insurance. Positive results can get a "probable" Celiac diagnoses, but not the "gold standard". Not every Celiac gene has been identified. The test can be said to be 98% accurate. Not good enough if you fall into the 2% the lab knows the are going to miss.

~Damage resulting from Celiac or DH destroys the villi which interfers with all nutrient absorbtion and digestion.

~There are so many differering opinions on how much gluten to be eating and how long before the test. Most say the amount should be at least a bread slice a day, and I don't know the best length of time to tell you. Ask your doctor, some say 2 weeks to 2 months. (it is said that one micron, about the size of a crumb, can cause a symptomatic reaction) Gluten challenges can be dangerous. My daughter was hospitalized for dehydration.

Good Luck. I hope you find you answers quickly and your healing is even quicker.

happygirl Collaborator
happygirl
Posted

And, there are newer/better tests in place of the AGA test: anti DGP

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  • Posts

    • 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?

      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!
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