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Waiting For Results

AandGsmomma

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AandGsmomma Apprentice
AandGsmomma
Posted

I had my 5 year old tested yesterday and now Im just waiting for results. Im more afraid of a false negative than a positive. I just hope what ever the result that its accurate. I dont want to find out in a year or five that she was celiac and I have been damaging her.

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GottaSki Mentor
GottaSki
Posted

This is why many of us suggest giving the strict removal of gluten a good three month trial after testing is complete.

I hope you receive clear testing results, but if not removing all gluten to monitor symptoms is the best next step to make sure your test results were accurate.

Children generally improve very quickly when gluten is the cause of their symptoms - whether it be Celiac Disease or Non-Celiac Gluten Intolerance.

Cara in Boston Enthusiast
Cara in Boston
Posted

Yes, I agree. Once testing is done, regardless of the results, try the diet (strict - don't cheat just because it is only a test) and see if the original symptoms resolve. Also, double check to make sure you got the complete panel done . . . sometimes a test is negative, but if you didn't get them all, there will always be a question.

Good luck. Waiting and not knowing is hard.

Cara

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

The dr office called and said it was negative but she didnt give me the numbers so Im going to go in and get a print out of the results.

megsybeth Enthusiast
megsybeth
Posted

AandGsmomma, what does your instinct say? I know that's not scientific but, not to be too snarky, a lot of doctors these days aren't too scientific either :huh: . I just say this because starting this summer I KNEW my son had (has) celiac and shortly thereafter I KNEW I had it too. I was right on both. But the first blood test on my son came back "negative" as well. My blood work came back strongly positive and his second round of blood work, with DGP, came back positive enough for me, combined with his genes and symptoms.

I don't know what your daughter's specific issues are but for me the big test of whether to go with the doctor is, if not celiac, what else? I've had celiac for thirty years and just been told it's nothing. But I wasn't ready to accept that my son going from 90th percentile to 5th percentile in height, having constant fatigue and early stages of anemia, weak and stained teeth and now constant diarrhea, is normal and "nothing". So I kept going with his GI who still believes he does not have it and just needs antacids (????) but got an appointment in to see a celiac specialist at the end of the month. He's off gluten and I believe he has celiac. Let's hope both our little ones get better soon.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

Megsybeth, its interesting that you ask what my instinct says. I have felt like something was off with her for a while. Her growth is fine for now, but she has awful constipation. When she does go, its tan and sorry to be gross, but HUGE! She is very pail and has dark circles under her eyes. She complains of leg pain. The biggest issue is the sudden behavior change. She has always been a bit anxious but latley her anxiety has been a big problem as well as huge off the charts tantrums over nothing.

AandGsmomma Apprentice
AandGsmomma
Posted
  • Author

I also have come up negative on blood /endoscope but have esiohigitis and issues with vitamin deficiancy along with family history of celiac.

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megsybeth Enthusiast
megsybeth
Posted

I would definitely report back here with her numbers because there are people on the board who know the tests in and out and can link you to research. Also, maybe look at Peter Green's book? Since you both have gluten issues, I'd take both of you gluten free and see what happens, after the testing of course. You can search this site for celiac knowledgeable doctors and post to ask for recommendations in your area.

My son only had positive DGP IGA so his old GI still does not consider him to have celiac. Pathologist said biopsies were negative for celiac. But I have it, he has it. I would like the specialist I'm seeing in two weeks to confirm it but to me going gluten free is really nothing compared to watching your child suffer and not having anything to do.

Good luck! And check out the cookbook "Gloriously Gluten Free". So delicious I recommend it to non-celiac friends.

Cara in Boston Enthusiast
Cara in Boston
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

frieze Community Regular
frieze
Posted

behavior change was our only symptom in my then 5 year old. First doctor did tests and said NOT celiac. By then, I had tested positive and just knew he was so we kept looking. Took him to a specialist who did endoscopy and found extensive damage. Trust your instincts.

Original "know-it-all" doctor said he didn't have it because he was not positive on the TTG IgA or the Gliadin IgA. He was positive on all the IgG tests, but that didn't seem to interest the doctor. His gene test also indicated a "low" probability. That, and the lack of "classic" symptoms led him to to the conclusion that he didn't have it. He was also very bossy and condescending, so we were happy to go elsewhere.

cara, please make sure this doc's name is known in your local celiac community....

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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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