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Sick And Suspicious


MartyrMom2

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MartyrMom2 Rookie

Hey everyone! I am glad to have stumbled onto this site! I really appreciate the wealth of information and the sense of community here. I am a newbie and have posted under a few different topics already. I hope to not repeat myself, but I wanted to share my personal history to see if any of you think my symptoms/diagnoses (please see my signature or other posts) warrant testing for Celiac Disease or not. I am a 34-year-old female, but my health started to deteriorate 7 years ago. In late Sept.'05, I developed what I thought at the time was a stomach virus. I had pretty intense abdominal pain that radiated to my back and diarrhea. I purchased some Imodium and went about my day. My symptoms lasted throughout the day, only to stop the next, and then return again. My symptoms continued so I consulted a gastroenterologist. In Jan. '06, I had an endoscopy and colonoscopy. I was diagnosed with IBS. I left the office with a pamphlet and a RX for Hyoscyamine. My abdominal pain and diarrhea continued for the next seven years (until present day). I finally discontinued the Hyoscyamine in Aug. '07 due to its ineffectiveness. I might as well have taken a placebo. I was diagnosed w/ hypothyroidism in Oct. '08 and put on Synthroid. While I am thankful to have had an astute physician recommend testing my thyroid (I know some women aren't as lucky), I am frustrated that I do not know the cause of my thyroid disease or my IBS. I am curious to know if it is Hashimoto's or not and furthermore whether gluten is the culprit. I have developed additional symptoms over the years, namely unidentified rashes, unexplained bruising, acid reflux, and lactose intolerance. I am slightly overweight and experience constipation as well, but my view is that w/ having an underactive thyroid, these symptoms don't negate Celiac Disease. My latest complaint is sciatica-type back pain. Let's just say my heating pad is my new best friend! What brought me to the suspicion of Celiac Disease or even gluten sensitivity again is that I picked up the latest issue of Woman's World magazine due to the headline grabber, "Sluggish Thyroid?" Inside it stated than an underactive thyroid might be due to an undiagnosed gluten or dairy sensitivity. I have two young daughters and I want to know if there's even the remote possibility that they have a chance to develop this disease. It wouldn't hurt to have some validation either. I know it seems like I've made up my mind, but after years of being treated like a neurotic nutcase, I suffer from self doubt. I would so appreciate any advice/suggestions any of you have to offer. Many thanks for taking the time to read my novel! :)


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shadowicewolf Proficient

It sounds like you might have it. Stay on gluten until all testing has been done, then go off it.

It is also genetic, there are two genes commonly found within 30% of the population that has been noted to be connected to celiac.

But, yes, with your issues, i would suggest going in and asking to have a full celiac panal done (which for the life of me i don't know off the top of my head) and then, should that turn out positive or inconclusive, go for the endoscopy. Regardless of its results, go try the diet.

I too had massive abdomen issues with my "D". It was random and got to the point where i'd have to take pepto bismol just to go out. Oh its just IBS the doctors said /sarcasm.

mushroom Proficient

Here's the full celiac panel of tests. Do be persistent in getting them all -- many doctors will only do the tTG IgA.

  • AGA (antigliadin antibodies)-IgA
  • AGA-IgG
  • tTG (anti-tissue transglutaminase)-IgA
  • EMA (anti-endomysial antibodies)-IgA
  • DGP (deamidated gliadin peptide)
  • Total serum IgA

Get the testing done sooner rather than later - your PCP can order it. The sooner you know the sooner you can start feeling better. Even if your results come back negative you should try going gluten free for at least 3-6 months. And do stay eating gluten until all testing is completed.

Let us know how it turns out. :)

MartyrMom2 Rookie

Thank you, ladies or gentleman?! :unsure: I think I will pursue getting the full panel of blood work this week! Be blessed! :D

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    • RMJ
      So her tissue transglutaminase antibody is almost 4x the upper end of the normal range - likely a real result. The other things you can do besides an endoscopy would be: 1.  Genetic testing.  Unfortunately a large proportion of the population has genes permissive for celiac disease, but only a small proportion of those with the genes have it. With family history it is likely she has the genes. 2.  Try a gluten free diet and see if the symptoms go away AND the antibody levels return to normal. (This is what I would do). Endoscopies aren’t always accurate in patients as young as your daughter. Unfortunately, without an endoscopy, some doctor later in her life may question whether she really has celiac disease or not, and you’ll need to be a fierce mama bear to defend the diagnosis! Be sure you have a good written record of her current pediatrician’s diagnosis. Doing a gluten challenge for an endoscopy later in life could cause a very uncomfortable level of symptoms.   Having yourself, your husband and your son tested would be a great idea.  
    • Samanthaeileen1
      here are the lab ranges.  Normal ranges for tissue transglutaminase are: <15.0 Antibody not detected > or = 15.0 Antibody detected normal for endomysial antibody is < 1.5. So she is barely positive but still positive. 
    • JoJo0611
      I have been diagnosed with coeliacs disease today after endoscopy, bloods and CT scan. I have also been diagnosed with Mesenteric Panniculitis today. Both of which I believe are autoimmune diseases. I have been told I will need a dexa scan and a repeat CT scan in 6 months. I had not even heard of Mesenteric Panniculitis till today. I don’t know much about it? Has anyone else got both of these. 
    • RMJ
      The normal ranges can vary for the tissue transglutaminase and gliadin antibody celiac tests because the units aren’t absolute.  Could you please tell us what the normal ranges are for the laboratory used? If her tissue transglutaminase results are 10-fold above the normal range some would diagnose her on that alone.  Endomysial antibody ranges are more standardized, and a titer of 1:5 would usually be normal.  Might that be the normal range and not her result?  Her total immunoglobulin A is normal for her age. (This is tested because if low, then the other IgA tests might not be valid).
    • Samanthaeileen1
      Hello there! New to celiac community, although I have lots of family in it.  My two year old was just diagnosed with celiac disease based on symptoms and bloodwork.  symptoms (swollen belly, stomach hurting, gagging all the time, regular small vomit, fatigue, irritability, bum hurting, etc) she got tests at 18 months and her bloodwork was normal. She just got tested again at 2 1/2  because her symptoms were getting worse and these were her results :   Tissue Transglutaminase Ab, IgA 58.8 Unit/mL (High) Endomysial Antibody IgA Titer 1:5 titer (Abnormal)   Gliadin Antibody IgA < 1.0 Unit/mL Gliadin Antibody IgG 8.5 Unit/mL Immunoglobulin A 66 mg/dL Her regular pediatrician diagnosed her with celiac and told us to put her on the strict gluten free diet and that we wouldn’t do an endoscopy since it was so positive and she is so little (26lbs and two years old). I’m honestly happy with this decision, but my family is saying I should push and get an endoscopy for her. It just seems unnecessary and an endoscopy has its own risks that make me nervous. I’m certain she has celiac especially with it running in mine and my husbands family. We are now thinking of testing ourselves and our 5 year old as well.  anyways what would y’all recommend though? Should we ask for an endoscopy and a GI referral? (We are moving soon in 5 months so I think that’s part of why she didn’t refer us to GI)    
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