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Possible Celiac Diagnosis?

meaghan2

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meaghan2 Newbie
meaghan2
Posted

Hi, I'm 17 and I had my annual physical last week. Ever since May, I've been having symptoms on and off that sort of point to celiac. I've never really thought about them since I've always been making excuses for everything.

I have had iron deficiency anemia for almost 2 years, so I thought the sore muscles and fatigue were due to low iron. When I got my levels checked last week, I had higher hemoglobin levels than I've ever had before. I was 12.3 back in January, but in July I was 15.6 and my supplement intake and diet havent changed.

I've had stomach pains, nausea, and diarrhea on and off for like two months. The last time I remember having really bad stomach pains was after a weekend of graduation parties where I had pasta and bread for basically every meal for 3 days last month. I thought I was just tired of eating ziti 24/7 and avoided eating it so much. I've always been under the impression that most people with celiac have had symptoms that are constant.

Some stuff has been constant. I have had angular cheilitis, a strange occurrence of eczema on the back of my hands and fingers (I've had it for years on my arms and calves), and dandruff accompanied by some acne-like bumps on my scalp for the past two months.

So for anyone who has been diagnosed, were your symptoms constant? Did you guys have stomach pains all the time, or did it only occur once in a while? I haven't switched to a gluten free diet yet, and I won't until have a diagnosis. Sorry for the long post, but I'm just curious on how everyone else felt before they were diagnosed. I'm still waiting for my blood work to be process, so nothing is definite yet.

PS: I'm sorry if anything I said came off as offensive, I'm not entirely sure if there's certain slang everyone uses or words that are avoided. I apologize in advance.

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cyclinglady Grand Master
cyclinglady
Posted

Hemoglobin levels can fluctuate depending on iron absorption if this is your issue (e.g. Adding an iron supplement). Was your iron stores (ferritin) tested?

Celiac symptoms can wax and wane. Some of us never experience any abdominal symptoms. I encourage you to check out the University of Chicago's celiac website and hit the library to research celiac disease. It is good that you are being your own health advocate!

Let us know the test results and welcome to the forum!

meaghan2 Newbie
meaghan2
Posted
  • Author

I'm so glad I found this forum in the first place! If I do turn out to have celiac, it will be nice to have some people to talk to:)

I had a hemoglobin test on the office, then I was sent to do blood work sickle cell anemia (which was only because NCAA requires it), celiac, mono, vitamin d deficiency (requested by my coach), and thyroid abnormalities.

After my iron levels were raised from when I initially tested anemic, I've always been about 11-12.5. I always take those flintstone vitamins with iron, then when I'm on my period I swap them out for a 45 mg iron supplement to make up for the blood loss. The sudden spike baffled my doctor.

I'll know by then end of this week...

Salohcin Newbie
Salohcin
Posted

Hey meaghan2, welcome to the forums!

https://www.celiac.com/forums/topic/112131-possible-celiac-diagnosis/

^ Above is a link to a thread I made awhile ago detailing my story. If I were you, I would definitely look into getting some Celiac blood screening done. Some of my symptoms were similar, except I was always constipated and bloated as opposed to having diarrhea. All of my issues came and went too. Just do as much research as you can, and I wish you good luck - you are at the right place!

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  • Posts

    • Rogol72
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Rogol72 · Posted

      @HAUS, I was at an event in the UK a few years back. I remember ringing the restaurant ahead to inquire about the gluten free options. All I wanted was a few gluten free sandwiches, which they provided and they were delicious. The gluten-free bread they used was Warbutons white bread and I remember mentioning it on this site before. No harm in trying it once. It's fortified with Calcium and Iron. https://www.warburtonsglutenfree.com/warbs_products/white-loaf/ The only other gluten-free bread that I've come across that is fortified is Schar with Iodized salt, nothing else.
    • Scott Adams
      Sainsbury's Free From White Sliced Bread - Now Egg Free - Completely Ruined It

      By Scott Adams · Posted

      In the U.S., most regular wheat breads are required to be enriched with certain B-vitamins and iron, but gluten-free breads are not required to be. Since many gluten-free products are not enriched, we usually encourage people with celiac disease to consider a multivitamin.  In the early 1900s, refined white flour replaced whole grains, and people began developing serious vitamin-deficiency diseases: Beriberi → caused by a lack of thiamin (vitamin B1) Pellagra → caused by a lack of niacin (vitamin B3) Anemia → linked to low iron and lack of folate By the 1930s–40s, these problems were common in the U.S., especially in poorer regions. Public-health officials responded by requiring wheat flour and the breads made from it to be “enriched” with thiamin, riboflavin, niacin, and iron. Folic acid was added later (1998) to prevent neural-tube birth defects. Why gluten-free bread isn’t required to be enriched? The U.S. enrichment standards were written specifically for wheat flour. Gluten-free breads use rice, tapioca, corn, sorghum, etc.—so they fall outside that rule—but they probably should be for the same reason wheat products are.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      Keep in mind that there are drawbacks to a formal diagnosis, for example more expensive life and private health insurance, as well as possibly needing to disclose it on job applications. Normally I am in favor of the formal diagnosis process, but if you've already figured out that you can't tolerate gluten and will likely stay gluten-free anyway, I wanted to at least mention the possible negative sides of having a formal diagnosis. While I understand wanting a formal diagnosis, it sounds like she will likely remain gluten-free either way, even if she should test negative for celiac disease (Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If her symptoms go away on a gluten-free diet, it would likely signal NCGS).        
    • JoJo0611
      CT with contrast.

      By JoJo0611 · Posted

      Thank you. 
    • deanna1ynne
      Inconclusive results

      By deanna1ynne · Posted

      Thank you all so much for your advice and thoughts. We ended up having another scope and more bloodwork last week. All serological markers continue to increase, and the doc who did the scope said there villous atrophy visible on the scope — but we just got the biopsy pathology report back, and all it says is, “Duodenal mucosa with patchy increased intraepithelial lymphocytes, preserved villous architecture, and patchy foveolar metaplasia,” which we are told is still inconclusive…  We will have her go gluten free again anyway, but how soon would you all test again, if at all? How valuable is an official dx in a situation like this?
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