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Negative Blood Test For My 5 Year Old

Hadleygirl02

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Hadleygirl02 Rookie
Hadleygirl02
Posted

My daughter's blood test results came back and they were negative for celiac. One of her numbers (for Ttg? Or Tig? Tga? I have no idea!) was a 3. Does that sound about normal?

My frustration is growing. I have said previously, one of my big fears is we will never find an answer for her. sad.gif The next step....she is going to start taking a prescription antacid to see if that doesn't help her abdominal pain.) If her appetite is still decreased and she is still complaining of pain in a couple weeks, then they will do an u/s and possibly a endoscopy.

I just hate not having any answers. My poor girl has suffered for most of her life with constipation, encopresis, often diarrhea in between constipation. Extremely smelly, fatty stools. Off and on hip/leg pain. Over the last couple months, she has complained pretty mcuh daily of abdominal pain. Her appetite is considerably decreased.

All blood tests normal. Stool tests normal.

She has a rash on her butt that has pretty much been there for a year and a half, has not responded to antibiotics, creams, etc.

I THOUGHT the gastroenteroligist did a swab of her rash to see if it was DH (the rash that goes along with celiac) but I misunderstood. THey just swabbed her for a strep infection. If I want a skin biopsy, I have to take her to a dermatologist.

I am soooo FRUSTRATED. WHY does my daughter have a rash that won't go away? Is she destined to be on Miralax for the rest of her life? Will she always have trouble pooping? Will her belly hurt chronically? Why is her appetite so decreased?

What is my next step?

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Darn210 Enthusiast
Darn210
Posted

Hadleygirl,

So sorry that you are still looking for answers.

I saw that you did a stool test. Was that through Enterolab? Did it check for gluten intolerance? Did anybody do any gene testing to see if she is genetically at risk?

There is nothing to stop you from trying a gluten-free diet. There are plenty of people on this board who did not have a positive diagnosis and had great improvements to their health by eating gluten-free. It doesn't hurt to try. If you are going to pursue additional testing with your GI, you might want to wait until after that has been done, or at least inform him that you are going to do a trial run of gluten-free.

Good Luck - I hope your dd gets some relief soon.

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      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2, I was on Miralax for several months after I crushed three vertebrae and fractured my hip.  The compression fractures of my vertebrae affected the Vagus nerve that stimulates digestion and intestinal movement, peristalsis. Miralax just didn't relieve the constipation I was experiencing at all.  Nothing budged.  I tried Milk of Magnesia (magnesium oxide) which pulls water into the digestive tract, and found that rather harsh and dehydrating.   Bad idea. I was already taking thiamine in various forms, Benfotiamine, TTFD (tetrahydrofurfuryl  disulfude), Lipothiamine and Allithiamine.  Click on my name, then Activities in the pull down menu to get to my blog to learn more about my journey with thiamine.   Since we need more thiamine when we are physically ill and emotionally stressed, I decided to focus on TTFD,  Benfotiamine, and magnesium l-threonate.  Within a week of increasing my doses a bit, my constipation was gone.  It took several more months to heal the compressed nerve damage.  For pain, I take a combination of TTFD, Pyridoxine B 6, and  Cobalamine B12 which together have an analgesic effect.  I can't function with pharmaceutical pain killers, besides they cause constipation.   Mechanisms of action of vitamin B1 (thiamine), B6 (pyridoxine), and B12 (cobalamin) in pain: a narrative review https://pubmed.ncbi.nlm.nih.gov/35156556/ Yes, I did just stop the Miralax, but I wasn't on it as long as your daughter.  Yes, there's a difference between adults and children.  Yes, my circumstances were different than your daughter's, but thiamine deficiency does affect the nerves and the brain.  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function (which activates the Vagus nerve and controls digestion).   I recommend you visit Dr. Chandler Marrs' website, hormonesmatter.com.  Dr. Marrs worked with Dr. Derrick Longsdale, a pioneer in thiamine research, specifically with children and autism spectrum disorders.  She has been very helpful to me when I reached out to her.  She would be better able to guide you about your daughter's care. https://hormonesmatter.com/sibo-ibs-constipation-thiamine-deficiency/#google_vignette Do stay in touch, please.  You can start another thread or personal message me any time.  My heart goes out to you, your husband, and especially your daughter.   Namaste
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      Hidden Gluten in distilled vinegar

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      @knitty kitty  The information you've provided is invaluable!  I have a lot more homework to do before we make the official switch but you have significantly increased my hope that we can get her off Miralax (she started at 3 years old and is almost 8!).  This weekend my husband and I plan to solidify all the details for a start point, then adjust as we go along.  I realize that everyone's body is different, then there's also the fact that she's a child but just out of curiosity if you don't mind sharing and if you'd rather not, no problem at all-how long did you take Miralax before switching and when you switched, did you just completely stop the Miralax or was there a period where you did Miralax and the supplements?  I plan to research that piece this weekend but just curious what you did.  
    • BIg Nodge
      Opinions on my test results/symptoms

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