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New Here With A Few Questions :)

mykdsmomy

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mykdsmomy Newbie
mykdsmomy
Posted

Hi there. I'm so glad I found this forum and I have a few questions if you dont mind :)

I have dealt with IBS and some undiagnosed autoimmune issues for some time now. I've had autoimmune stuff since I was little but when I turned 18, I began to have IBS symptoms as well as depression.

I asked the dr. to run a celiac test a few months back and it came back normal but I'm not convinced. Is it possible to have a gluten intolerance but not have it show up in a blood test? I'm really thinking of going gluten free (i've been doing a lot of research). I CRAVE bread products constantly and tend to have a dairy intolerance and an oat intolerance but I dont notice huge problems after eating say a cracker or piece of bread.

Is it worth it to go gluten free for a while and see how I feel? Is it truly possible to have gluten problems regardless of what blood tests say? Thanks so much for any help. I'm just at the end of my rope right now :(

I also had my gallbladder out last year and since then have developed a fatty liver and borderline pre diabetes along with "liver sontes" it's just getting out of control and the dr's dont know what to do anymore :( TIA

Judy

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dlp252 Apprentice
dlp252
Posted

Yes, it is possible to be gluten intolerant and not have it show up in the blood tests. Since you've already had the testing, you may want to give the diet a try for a few months. My doctor did my blood tests and endoscope AFTER I went gluten-free, so we both figured it wouldn't show anything, but he did say that diet is a valid indication. (But without the positive test results, he would not diagnose me with Celiac.) I ended up having my testing done at Enterolabs, who uses stool testing to find antibodies for gluten and a handful of other things.

Guest cassidy
Guest cassidy
Posted

Yes, it is very possible to have celiac or gluten intolerance and have a negative blood test. The blood test is only about 50% accurate. You can certainly try the diet and see how you feel. You probably need to give it a good month of being very strict. If you have a problem with gluten you should feel better by then.

There is great info here and I hope that you find the answers that you need.

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    • trents
      Medication

      By trents · Posted

      I don't see how cornstarch could alter the test results. Where did you read that?
    • knitty kitty
      Medication

      By knitty kitty · Posted

      For pain relief I take a combination of Thiamine (Benfotiamine), Pyridoxine B 6, and Cobalamine B12.  The combination of these three vitamins has analgesic effects.  I have back pain and this really works.  The B vitamins are water soluble and easily excreted.   Hope this helps!  Keep us posted on your results!
    • knitty kitty
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By knitty kitty · Posted

      Welcome to the forum, @Xravith. I experienced similar symptoms before my diagnosis.  Mine were due to the loss of vitamins and minerals, essential nutrients we must get from our food.  With Celiac Disease, the intestinal lining, made up of thousands of villi, gets damaged and cannot absorb essential vitamins and minerals, especially the eight B vitamins.  The loss of Thiamine B 1 can cause muscle loss, inability to gain weight, edema (swelling), fatigue, migraines and palpitations.  Low thiamine can cause Gastrointestinal Beriberi with symptoms of nausea, abdominal pain and bloating.   Thiamine is only stored for a couple of weeks, so if you don't absorb enough from food daily, as the thiamine deficiency worsens physical symptoms gradually worsen.  If you're eating lots of carbs (like gluten containing foods usually do), you need more thiamine to process them (called high calorie malnutrition).  Thiamine works with all the other B vitamins, so if you're low in one, you're probably getting low in the others, too, and minerals like iron, magnesium, zinc, and calcium, as well as Vitamin D..  Talk to your doctor about checking for nutritional deficiencies.  Most doctors rarely recognize vitamin deficiency symptoms, especially in thiamine. Get a DNA test to see if you carry any Celiac genes.  If you do not have genetic markers for Celiac, it's probably IBS.  If you do have genetic markers for Celiac, it's probably Celiac.  I was misdiagnosed with IBS for years before my Celiac diagnosis.   Keep us posted on your progress. P. S. Deficiency in thiamine can cause false negatives on antibody tests, as can diabetes and anemia.  
    • Julie 911
      Medication

      By Julie 911 · Posted

      No she didn't because if I want to ask I have to pay 700$ for 1 hour appointment so I couldn't even ask. I read that fillers like cornstash can alter the result and tylenol contains it so that's why I tried to find someone who can answer. 
    • trents
      Medication

      By trents · Posted

      Did the GI doc give you any rational for stopping the Tylenol during the gluten challenge? I have never heard of this before and I can't imagine a good reason for it. Ibuprofen, maybe, because it is an anti inflammatory but acetaminophen?  I don't see that it would have any impact on the test results to take Tylenol.
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