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Body Aches

sarahnaser

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sarahnaser Rookie
sarahnaser
Posted

hello, eveyone. my daughter (6yr old)has her first GI visit on the 24 and i am waiting and waiting. but for last 2 weeeks my daughter has been complaining of body aches. the doctor said it could be a virus since no high fever is present. then we went again and she said it could be her allergies. but i don't think the doctor even know. Does anyone have similiar problem? i read in one of the boards that celiac can cause fatigue. what do you do? take motrin everyday? i am confused. should i change doctors? i can't go gluten free yet until teh GI says right?

sarah naser

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flagbabyds Collaborator
flagbabyds
Posted

It could be that she is so malnourished that her bones are starting to disenigrate and that happened to me and besically they said that my bones were so thin that i couldn't walk becuase it hurt me so much maybe you should ask you doctor about that becuase when i was sick they did a muscle biopsy becuase it i couldn't walk and they put me on vitamins and after the diet started i got better and was able to walk again

Guest jhmom
Guest jhmom
Posted

Hi Sara, I am sorry your daughter is in that kind of pain. Since everyone has different symptoms with Celiac it is possible the "pain" is related!?!?!?

As far as the fatigue goes, I have not found anything that helps with it. Right now, I rest when I need to and try not to overdo it. However when your daughter comes off Gluten she should feel a difference within a couple of days and it can take up to months to feel 100% better.

You can put your daughter on a gluten-free diet at any time but if your GI wants to run blood work or other tests she MUST be on gluten for it to come back accurate. There is another option for you which is Open Original Shared Link they perform a stool panel test which is more sensitive than the blood and a lot more accurate and you DO NOT have to be on gluten!!

I know how you must feel my 8 year old has had problems since she was a baby and after I was diagnosed with celiac disease I had her tested through Enterolab and she has it also. After being gluten-free since Sept we are both feeling better, she seems to have more energy and does not complain of abdominal pain!

Hang in there! :D

KAthyB Newbie
KAthyB
Posted

My daughter definitely has body aches related to gluten. They went away while she was gluten-free for 7 weeks and are back now that she is consuming gluten again for her biospy tomorrow. Mainly it is her legs that ache and not much helps. Warm showers or baths are better than using the motrin for a little one. Good Luck!

KathyB

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      So you're saying that you think you should have severe intestinal damage since you've had the symptoms so long?   DGP IgG antibodies are produced in response to a partial gluten molecule.  This is different than what tissue transglutaminase antibodies are  produced in response to.   TTg IgA antibodies are produced in the intestines in response to gluten.  The tTg IgA antibodies attack our own cells because a structural component in our cell membranes resembles a part of gluten.  There's a correlation between the level of intestinal damage with the level of tTg antibodies produced.  You are not producing a high number of tTg IgA antibodies, so your level of tissue damage in your intestines is not very bad.  Be thankful.   There may be reasons why you are not producing a high quantity of tTg IgA antibodies.  Consuming ten grams or more of gluten a day for two weeks to two months before blood tests are done is required to get sufficient antibody production and damage to the intestines.  Some undiagnosed people tend to subconsciously avoid lots of gluten.  Cookies and cakes do not contain as much gluten as artisan breads and thick chewy pizza crust.  Anemia, diabetes and thiamine deficiency can affect IgA antibody production as well.   Do you carry genes for Celiac?  They frequently go along with EDS.
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      Food and environmental allergies involve IgE antibodies.  IgE antibodies provoke histamine release from mast cells.   Celiac disease is not always visible to the naked eye during endoscopy.  Much of the damage is microscopic and patchy or out of reach of the scope.  Did they take any biopsies of your small intestine for a pathologist to examine?  Were you given a Marsh score? Why do you say you "don't have intestinal damage to correlate with lifelong undiagnosed celiac disease"?   Just curious.  
    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      I was tested for food allergies and environmental allergies about 7 months before I started taking Naltrexone, so I don't think that is the cause for me, but that's interesting!  The main thing with the celiac thing that is throwing me off is these symptoms are lifelong, but I don't have intestinal damage to correlate with lifelong undiagnosed celiac disease.
    • trents
      Finding gluten free ingredients

      By trents · Posted

      Welcome to the forum, @Kara S! Warrior bread is a grain free bread product. Google it. There are commercial mixes available, I believe, Youtube videos and many recipes. 
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