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Could This All Be Gluten Related?

kiddo0215

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kiddo0215 Newbie
kiddo0215
Posted

Hello! I have been on an elimination diet for about a month now, and I am suspicious that my children probably need to be gluten free as well. As you all know, the diet can be difficult...my plan was to find out for sure if I have a problem and then to "force" the diet on my children to see if it helps some of the "symtpoms" that I have noticed in them since I started researching.

I have a maternal aunt who is diagnosed Celiac. I could conject that my Mom was also and perhaps several of my aunts (all with stomach pains all the time and lactose intolerance). Several also have a range of autoimmune disorders (Lupus, Sjogrens, RA)

My questions today relate to my 14 year old daughter. She was diagnosed with Asthma at age 11, Osgood Schlatter at 12, and yesterday with ovarian cysts. She has depresssion and mood swings.

I haven't scheduled the ER follow up for the ovarian cysts yet- I wanted to research them a bit first. The Osgood Schlatter was supposed to go away within 6-12 months. It has not. In fact it is still bothersoem to her on almost daily basis. She also has headaches, neck and back pain.

I requested her doctor to do a gluten blood test last week and she said that because of the cost the patient would be required to do an elimination diet first. From what I read, that isn't necessarily the best idea.

It seems too simple for all of these symptoms to relate back to gluten, but I have to consider the possibility... does this all sound like it could stem from celiac or a gluten senitivity?

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ravenwoodglass Mentor
ravenwoodglass
Posted

There has been some recent research that shows a link between Asthma and celiac, there was an article about it the other day in the Health section of Yahoo News. From my own experience I know my asthma was caused by celiac because it resolved completely on the diet.

Celiac can cause inflammtion that can cause issues with the muscles and tendons so the pain that she is having could be related.

I don't know for sure about the ovarian cysts but my DD has suffered greatly from them since she went off the diet.

If you absolutely can't get the doctor to at least do a blood test then you would need to go with a dietary trial. Since the blood tests and biopsies can have false negatives anyway you would need to do the trial no matter what the test results.

kiddo0215 Newbie
kiddo0215
Posted
  • Author

Thank you for your response! I guess sometimes I just need someone to state the obvious... wonder how to break the news to her...

ravenwoodglass Mentor
ravenwoodglass
Posted

Thank you for your response! I guess sometimes I just need someone to state the obvious... wonder how to break the news to her...

I would call her doctor and tell her that since there is a family history of celiac you really want her tested. Also ask the doctor if they will give her a formal diagnosis if she responds to the diet as she may need one to keep her safe in school and in college. However there is a chance of a false negative and if you think she will resist the diet if the tests are negative you may want to just go with your original plan.

I would just tell her it may help the symptoms she is having and that if it doesn't help then you can stop after a couple of months. Also have her come here to the board, we even have a section for teens but she can feel free to post or read anywhere. It also may help to have her talk with the diagnosed celiac in the family so she can know that just because she is gluten free it doesn't mean that she can never have pizza, cakes or bread again, they will just need to be gluten free.

eatmeat4good Enthusiast
eatmeat4good
Posted

My son's asthma that he has had since childhood went away. He is 4 months gluten free. Had to use inhaler one time in all these months.

;)

She might be happy about going gluten free once she learns what it can help with.

I worried about how my son would take it too. Now he tells everyone how brilliant his mom is to have figured it out. I never would have imagined that response! :o

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    • knitty kitty
      High DGP-A with normal IGA

      By knitty kitty · Posted

      @rei.b,  I understand how frustrating starting a new way of eating can be.  I tried all sorts of gluten-free processed foods and just kept feeling worse.  My health didn't improve until I started the low histamine AIP diet.  It makes a big difference.   Gluten fits into opioid receptors in our bodies.  So, removing gluten can cause withdrawal symptoms and reveals the underlying discomfort.  SIBO can cause digestive symptoms.  SIBO can prevent vitamins from being absorbed by the intestines.  Thiamine insufficiency causes Gastrointestinal Beriberi (bloating, abdominal pain, nausea, diarrhea or constipation).  Thiamine is the B vitamin that runs out first because it can only be stored for two weeks.  We need more thiamine when we're sick or under emotional stress.  Gastric Beriberi is under recognised by doctors.  An Erythrocyte Transketolace Activity test is more accurate than a blood test for thiamine deficiency, but the best way to see if you're low in thiamine is to take it and look for health improvement.  Don't take Thiamine Mononitrate because the body can't utilize it well.  Try Benfotiamine.  Thiamine is water soluble, nontoxic and safe even at high doses.  I thought it was crazy, too, but simple vitamins and minerals are important.  The eight B vitamins work together, so a B Complex, Benfotiamine,  magnesium and Vitamin D really helped get my body to start healing, along with the AIP diet.  Once you heal, you add foods back in, so the AIP diet is worth doing for a few months. I do hope you'll consider the AIP diet and Benfotiamine.
    • captaincrab55
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    • rei.b
      High DGP-A with normal IGA

      By rei.b · Posted

      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
    • knitty kitty
      High DGP-A with normal IGA

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      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.
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