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SkyBlue4

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  1. Thank you cyclinglady and emilykay405 for your responses.  I got an appointment with gastroenterology at the beginning of October and was told that they will not perform a biopsy or do any labs that day.  The scheduler told me to bring the lab results I got from my Dr. and if the gastroenterologist feels more testing needs to be done he will send me for more labs and a biopsy outside. 

     

    The main reason I want a diagnosis is for my two kids.  I have a 2 year old and a 7 year old.  I am worried that they may have Celiac or a gluten intolerance also.  My 7 year old was diagnosed with Autism when he was 2. They think Aspergers.  He just had a physical exam yesterday and has not gained weight for a long time. He is 46lbs.  From what I read, it seems like there may be a connection with undiagnosed Celiac pregnancies and kids born with Autism. Also, there is the connection of gluten and difficulty gaining weight.  He loves carbs like toast and sandwiches etc.

     

    My 2 year old was put on Synthroid this week for high TSH.  His levels were tested 5 times since birth.  At birth it was normal but the last 4 times the number was slightly elevated.  He was born full-term at only 6.5lbs.  I read that undiagnosed Celiac pregnancies lead to low birth-weight babies.  I breastfed him until he was 1.  During the time he was breastfed his weight went up to the 50th percentile.  The pediatrician was concerned with the weight gain. They told me to start him on cow milk and then baby cereal.  Once he was put on baby cereal his weight dropped all the way down to the 2nd percentile and then the pediatricians said this was failure to thrive.  He stayed around the 2nd-5th percentile for a long time. Right now he is finally moving up towards the 10th percentile at 26lbs. Next week he will be 32 months old to be exact.  I am wondering if gluten is making it difficult for him to gain weight since the weight problem started when we introduced cereal. Also, I read that there is a connection with Celiac and the thyroid. 

     

    I told the pediatrician about my lab results and requested the Celiac panel for both of my kids.  She said no since my kids are not symptomatic.  She said she will not order any labs for them until I get a diagnosis through a biopsy.  So I think I do have to eat gluten.  It is just so difficult to eat gluten, be sick in bed and not function, when I have two little kids. I was wondering if anyone else has a similar story?  Does anyone have children with Autism or thyroid issues?  Does anyone diagnosed with Celiac have kids that also have Celiac? Thank you.  This board has been really helpful.  

     

    My story is complicated but I will give you the shorter version. I was diagnosed IBS years ago. I stopped questioning the symptoms after a doctor told me that if I wasn't bleeding into the toilet, then it was just IBS. Nice and thorough.  <_<

     

    Our first child died of intrauterine growth restriction (of unknown cause). My second was small for dates, diagnosed at 3 years old with failure to thrive and continues to have growth issues at 11 years old...specifically with gaining weight. Honestly, he looks like I starve him. He has Aspie traits but never diagnosed as such. I've had several children since and they are assumed healthy. After each pregnancy I gained yet another diagnosis. My signature lists a couple of them.

     

    My 11 yo spent the last year going through testing for GI symptoms and poor weight gain. All that came of those tests was a diagnosis of Lactose Intolerance. I'm thankful but it leaves lingering questions. I'm getting copies of all of his labs and tests to look over myself.

     

    So anyway, it has been a long journey and I still have a long way to go.

  2. The Total IGA is an important piece of the Celiac puzzle and will tell you if your tTG IGA result is valid. I would ask if they ran a full Celiac Panel and post all of those numbers here along with the lab ranges.

     

    I am newly diagnosed so I don't have much more feedback to offer you but other folks on this forum are extremely knowledgeable and can probably offer more insight.

     

    Good luck and I hope you get some answers soon!

  3. Thank you and I agree. I am contemplating starting a gluten-free diet before my endoscopy. 2 months is a very long time to know exactly what is making you so sick and continue doing it anyway. And for what? To see how bad it is? It doesn't make much sense, I know.

     

    But the hesitation I feel comes from concern that I won't fully commit if I hear that I looked normal during the procedure. That it may plant the seed of doubt. Can I possibly heal enough in 2 months to not see any evidence of the disease anymore?

     

    I need time to process all of this, I suppose. And as I remember someone saying in another thread, I need a little time to make peace with all the foods I will soon give up. One last trip to the bakery (and beer distributor)  :ph34r:    

     

  4. I just received a nice complement from my sister-in-law today!

     

    My niece has been having tummy issues that echo my old gallbladder symptoms.  I typed up a family history medical tree and sent it off to her mom.  My niece's new gastro was amazed that a patient came in with a complete medical history.  Within seconds, he was willing to order a celiac panel and HIDA scan based on my diagnosis of celiac disease and our horrible family history of non-functioning gallbladders.  

     

    When the doctor asked if they knew anything about gluten, my little niece pipped up saying, "My aunt and uncle are gluten free and they can't eat wheat!"

     

    My sister-in-law was so happy that for the first time a doctor really listened to them and my niece was thrilled that maybe this doctor can help her!  

     

    My suggestion is to take the time to create a medical history family chart and share it with your family.  Just use first names to protect privacy or just a title "Maternal Grandmother", etc.    It might just save a loved one from going through the same diagnostic hell most of us have been through!  No more, "Aunt Edna died of a wasting disease....not sure exactly what she had."

     

    I've done this. We have too many autoimmune issues in our family for me to remember them all when I see a new doctor. Besides, It's more efficient to bring my own printed history along than to take the time to try to squeeze the writing it into their tiny little family history box while I'm sitting in the waiting room.  :huh:

  5. I posted a month ago (maybe two) about my labs and thought I would post an update after finally being seen by a Gi doctor.

     

    My labs had revealed low IGA but mildly elevated tTG IGA and tTG IGG. Yep, I'm an anomaly  B) .

    Here's a link to the thread with my labs.... https://www.celiac.com/forums/topic/103321-understanding-my-labs/

     

    Today the Gi doc looked at my labs and said I undoubtedly have Celiac disease. I was not fully shocked since I had had plenty of time to research and read through this forum but I thought he would wait until after the endoscopy to give the diagnosis. I still have to have the endoscopy (with all biopsies) but he said he really wants to simply assess the extent of the damage I have from Celiac. It will be my baseline before beginning a lifelong gluten free diet. If the damage is extensive, a repeat biopsy will be scheduled for 3 months after the diet has begun. I have to see a nutritionist as well. 

     

    The problem here, of course, is that I have to stay on gluten until the biopsy which is not until the middle of November. I just want to eliminate gluten NOW. I have had a ton of symptoms for so long and I am anxious to see if I can feel better gluten free.  

  6. I don't know if there would be a problem in obtaining health insurance specifically with Celiac Disease, but years ago I had problems getting an individual insurance policy because of Hashimoto's Thyroiditis (which is another autoimmune disorder).  

     

    I have Hashimoto's (my only diagnosis at the time) and applied for Life Insurance. The company did not want to insure me but offered my husband, who is quite overweight, a rather large policy. 

     

    I'm in the U.S. and self employed and just recently shopped for new health insurance. If I had had a confirmed diagnosis with an endoscopy, it would have raised my rates. They even made me fax them a signed statement that stated that I did not have a confirmed case of celiac before they approved my application. 

     

    This is my concern. I really don't need one more reason (diagnosis) for my rates to increase. You certainly make a good argument for skipping the endoscopy and going right to the diet. 

  7. I am wondering if you feel that having Celiac confirmed with a biopsy is for the best?

    That might sound like a strange question but I was reading on another forum about the downside of being a confirmed Celiac- increased health insurance rates. Who needs that?!

     

    Did anyone experience any problems with their insurance after a biopsy confirmed you have Celiac Disease?

     

    I have positive labs, lots of symptoms, other autoimmune issues and a positive family history. I know the biopsy is the gold standard to confirm but hate to have it done, have the label and then wish I had just skipped it and gone gluten free. I don't see the GI doc until September so there's lots of time to research (and stress). 

  8. I completely agree with Lisa, not many can have a positive tTG IgA with a low serum IgA. Even though it's a low positive, it's quite a high tTG IgA for your IgA level.

     

    With symptoms, a positive tTG IgA and tTG IgG, family history, and other autoimmune disease, I would say it is pretty likely that you have celiac disease. I hope you are both feeling better soon, and that you are able to get over your sticker shock.  LOL

     

    I like this microwavable bun recipe but we use coconut flour instead of almond. It's nice because you can experiment with the different flours in small amounts until you figure out what works for you. https://www.celiac.com/forums/topic/56641-easy-yummy-bread-in-minutes/  It saved me some sanity and a few bucks early on.   :)

     

    Thank for this recipe!

    My son's biggest complaint has been about the texture of the gluten-free bread we're buying for him. I'll have find the flour and give this a try.

  9. Thank you for that information!

     

    I wondered about the low total IgA result. Some information I had read seemed to indicate that it was not low enough to impact the tTG IgA and this confused me. 

     

    Given my symptoms and family history, I would not be at all surprised by this diagnosis. I just wish things were clearer for my son. He's a tiny guy and cannot afford to go on without weight gain. We are being very strict with the gluten/lactose free diet....and trying to stay patient. Boy, I had no idea how expensive Gluten free bread products were!  

  10. Hello,

    Thank you for taking the time to read my post. My question pertains to my lab results.

     

    Immunoglobulin A (IgA) -               64 mg/DL -  range 70-410

    Immunoglobulin G (IgG) -          1151 mg/DL - range 639-1349

    Gliadin IgA Antibody -                        2 U/mL - range 0-15

    Tissue Transglutaminase IgA Ab -   16 U/mL - range 0-15

    Tissue Transglutaminase IgG Ab -   18 U/mL - range 0-15

     

    No other Celiac tests were ordered. From what I have read, my labs are not really that off....but then again, I get confused reading through all the information about the labs. 

     

    I have.... 

    -Hoshimotos

    -Latent autoimmune diabetes (currently no insulin or special diet required to maintain glucose levels). 

    -Connective tissue disease vs polyarthritis (+ANA) 

    -I have struggled for years with what was assumed to be IBS symptoms

    -Vitamin D deficiency

     

    I am anxious to know more about my Celiac status b/c my 11 yo son has been struggling for a year with a whole list of GI and other symptoms that seemed to point to celiac disease...but his blood work and biopsy were both negative. He is iron deficient and was just diagnosed with lactose intolerance but the lactose free diet has not helped his symptoms and he is not gaining weight. We continue to go through testing with the pediatric gastroenterologist to investigate other possible enteropathies and have been told that we could give the gluten free diet "a shot" as well. We just started him on a gluten free diet this week and now I have received my own lab results to muddle through. 

     

    Any insight or opinions would be greatly appreciated! 

     

     

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