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Life Is Getting Better

anemic

By anemic
in Coping with Celiac Disease

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anemic Rookie
anemic
Posted

I've had my 5th iron infusion this week (5 more to go) and my ferritin is 99 (hasn't been for years) and my hemoglobin is 135. I feel really good- here are 10 reasons why

1. I finally have the energy to chase my children around, and actually catch them

2. I can focus at work and finally catch up on the last 2 years worth of mess

3. I'm getting used to potato and corn pasta and it's not so bad

4. I can fantasize about great bread with other celiac friends, its almost as good as...

5. My weight is going up

6. My anxiety is going down

7. I'm sleeping better

8. The dry skin, eyes seems to be improving, just in time for bathing suit season

9. I have to be organized about family meals so we're not wasting $ on take-out and fatty, nasty stuff

10. I am finally in control (somewhat) of my illness, rather than it controling me.

Tune in next week when I'm having a total meltdown over the craving for a hotdog bun and cold beer!

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missy'smom Collaborator
missy'smom
Posted

Glad to hear that you're feeling better. :)

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      Persistent isolated high DGP-IGG in child despite gluten-free diet

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      - trents replied to melthebell's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
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      Persistent isolated high DGP-IGG in child despite gluten-free diet

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    • cristiana
      What should I expect from a UK restaurant advertising / offering "Gluten Free" food

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      @trents  Good question.  We are strict at home, although I have to admit I've eating the odd chocolate at Christmas that turned out to have been made in a shared facility.  But that  is very unusual for me, and I had my last blood test before Christmas anyway.  Therefore I have concluded that eating out must be the issue.  But I'll let you know in September when I have my next blood tests done.  😊  
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Thanks very much for taking the time to write this. I have been pretty worried so appreciate reading any advice. Yes, the endoscopy will include a biopsy, and we have hopefully found a good pediatric gastro to guide us through it all.  Will also run the HLA typing - I have the swabs ready to go.
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      Persistent isolated high DGP-IGG in child despite gluten-free diet

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      Welcome to the celiac.com community, @melthebell! I certainly would have a biopsy repeated as it has been 5 years since the first one. You mentioned he was scheduled for an endoscopy but make sure a biopsy is also done. It's possible he, like you are, is a "silent" celiac where the damage to the intestinal mucosa happens very slowly and can take years to manifest to the point of being detectable and where symptoms are minimal or absent. At 10 years old, his immune system may not be mature enough het to trigger the usual IGA responses that the IGA celiac tests are designed to detect.  I would also have genetic testing done to confirm that he has or doesn't have the potential to develop celiac disease. The genetic profile can also offer insight into the type of celiac disease a person will develop if they ever convert from latent to active. Take a look at table 2 under the section "Types of Celiac Disease" in the article found in this link: https://pmc.ncbi.nlm.nih.gov/articles/PMC9980758/  Genetic testing is available from 3rd party labs. I think you just have to send in a cheek swab sample.
    • melthebell
      Persistent isolated high DGP-IGG in child despite gluten-free diet

      By melthebell · Posted

      Hello community; it's nice to have found you. I am a 42 year old biopsy confirmed celiac. I have had it since I was 18. Well managed on a gluten free diet. No idea if I have the gene (presume I do) as never tested. Diagnosed as was anaemic and had a high celiac market (can't recall which), and a positive biopsy. Asymptomatic. Given this, I regularly test my two children. My eldest is the child in question. First tested at age 5 due to slight anaemia. Everything negative except for a slightly high DGP IGG (slightly elevated at 25). Not IGA deficient. Did a biopsy with a pediatric gastro, was negative. Next test at age 8. Everything once again negative, high DGP IGG at 116 U/ml this time. Living in a country now with no celiac knowledge so decided to whack him on a gluten-free diet and see how he goes. Next test at age 9 after a year on gluten-free diet. Everything once again negative, high DGP IGG at 174 U/ml this time! On a gluten-free diet. Final test was a week ago at age 10, on continued gluten-free diet. Once again a positive DGP IGG, this time over 250 U/ml. On a gluten-free diet. what the heck is going on with my kid? We have seen a pediatric gastro via telehealth, who was equally puzzled and suggested doing a gluten challenge and an endoscopy, which we have schedule for end of April. Kid is otherwise fine. Energetic and growing well. No significant gastrointestinal symptoms. Has anyone encountered something like this before?
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