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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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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
      Ibuprofen

      By Colleen H · Posted

      Yes thyroid was tested.. negative  Iron ...I'm. Not sure ... Would that fall under red blood count?  If so I was ok  Thank you for the detailed response..☺️
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      Methylprednisone treatment for inflammation?

      By Colleen H · Posted

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    • cristiana
      Ibuprofen

      By cristiana · Posted

      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
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