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I'm Thinking I May Have Celiac

lauriegie

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lauriegie Newbie
lauriegie
Posted

Good evening,

First, let me say I am amazed! I have been reading all day on the boards and decided to join.

I am on a downward spiral and think that I may have celiac, instead of being crazy like the doctor's are making me seem.

I was diagnosed with GERD and RLS about 6 weeks ago and have been declining ever since. About two weeks ago, I noticed my right pupil was much larger than the left and began experiencing severe headaches. I went to the opthomologist and was diagnosed with Adie's pupil (unrelated but it is what kickstarted the journey) as well as Raynaud's. The opth. ordered some blood work and my iron levels were a little low in my red blood cells, so my PCP ordered more blood work. I only received two results, and one is that the normal range for iron total is 40-150 and mine is a 22. I am waiting on the results of my ferritin, rheumatoid factor, and ANA.

My body feels like jello, don't know where my muscles went and I'm so tired that it is killer trying to get out of bed for work. I have these ridiculously painful migraines and have had normal CT and MRI scans (thank goodness). I have dark circles under my eyes, having issues focusing for longer than a few minutes, major gas pains and stomach distension. After reading everything on here, I'm wondering if the entire answer for me is celiac instead of one issue after another.

Can you please let me know your thoughts, or am I just hoping for a diagnosis instead of feeling like I'm loosing my mind?

Thank you!

Laurie

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Korwyn Explorer
Korwyn
Posted
Good evening,

First, let me say I am amazed! I have been reading all day on the boards and decided to join.

I am on a downward spiral and think that I may have celiac, instead of being crazy like the doctor's are making me seem.

I was diagnosed with GERD and RLS about 6 weeks ago and have been declining ever since. About two weeks ago, I noticed my right pupil was much larger than the left and began experiencing severe headaches. I went to the opthomologist and was diagnosed with Adie's pupil (unrelated but it is what kickstarted the journey) as well as Raynaud's. The opth. ordered some blood work and my iron levels were a little low in my red blood cells, so my PCP ordered more blood work. I only received two results, and one is that the normal range for iron total is 40-150 and mine is a 22. I am waiting on the results of my ferritin, rheumatoid factor, and ANA.

My body feels like jello, don't know where my muscles went and I'm so tired that it is killer trying to get out of bed for work. I have these ridiculously painful migraines and have had normal CT and MRI scans (thank goodness). I have dark circles under my eyes, having issues focusing for longer than a few minutes, major gas pains and stomach distension. After reading everything on here, I'm wondering if the entire answer for me is celiac instead of one issue after another.

Can you please let me know your thoughts, or am I just hoping for a diagnosis instead of feeling like I'm loosing my mind?

Thank you!

Laurie

Hi Laurie and welcome to the board!

If you have been spending all day reading the forums, you know that many of your symptoms can be related to celiac disease, either directly or indirectly. Have you asked your PCP what they think about the possibility of celiac disease? If not, or if you are so desperate from the rapid decline (as I was) you can go gluten-free right away. Since so many celiac disease are also sensitive to dairy and soy, I would (from personal experience) suggest that if you do that (go gluten-free) you try eliminating all three right off the bat. But I'd really suggest you talk to your Dr. first.

curlyfries Contributor
curlyfries
Posted

You certainly could have celiac......and that can cause other issues to develop. That doesn't mean that the Reynaud's or Adie's pupil will necessarily go away on a gluten-free diet, however.

Though I did have GERD for many years which is now completely gone.

And many of us have felt like we were losing our minds.....often perpetuated by doctors who told us nothing was wrong with us.

lauriegie Newbie
lauriegie
Posted
  • Author

Thank you for the responses. I got a few more results back on my labs today that show my saturation level for iron is a low 5 and my ferritin is at a 1.

I have been prescribed an iron supplement and am having more TSH testing done as well as magnesium. My PCP is referring me to a gastroenterologist and I have scheduled an appointment on my own at a hematologist.

I keep pushing because I need to know what is wrong, yes, I do feel like I'm going crazy to say the least and my doctor wants me to stay out of work until I see my PCP again on the 13th. I hope I get answers soon.

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