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Running Down What Is Wrong


Rocketlegs

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Rocketlegs Newbie

I don't know what's wrong with me, but I'm beginning to wonder if I might have a gluten problem and possible Celiac disease.

I have been tired and not feeling well for years. But last summer I could still walk over a mile. Now I'm happy to get to the car. I'm severely lactose intolerant but I'd get sick sometimes even when I hadn't had milk. I was diagnosed with low vitamin D last summer. I started feeling worse a few months ago and it has gradually gotten to where I'm in horrible pain all over in the morning, stiff, hard to walk, dead to the world like a zombie. The pain and stiffness would get better after 1 or 2 hours. I could go to work, sit all day, go home and lay down. I'm 41!

I finally went to the doctor last week and my sed rate is elevated to 39. He is not concerned but suggested a sleep study due to my not getting asleep/staying asleep and feeling like hell. I have 2 aunts and 1 cousin that are off gluten due to sensitivities. So I started juicing and in just 3 days I have more energy, I sleep better, the pain and stiffness are nearly non existent.

Could I have celiac disease? Did any of you have elevated sed rates and similar symptoms? I looked up celiac disease and these are all symptoms I have: Abdominal pain, bloating, gas, or indigestion, Constipation, Decreased appetite, Diarrhea off and on, Lactose intolerance,

Nausea sometimes, Stools that float, are foul smelling, Unexplained weight loss (only 5 pounds the last few months), Bruising easily,

Depression or anxiety, Fatigue, Hair loss, Itchy skin, Missed menstrual periods (except very heavy the last 2 months), Mouth ulcers (comes and goes), Muscle cramps and joint pain.

Thyroid and rheumatoid markers/tests are normal.

Since my doctor is not concerned and thinks nothing is wrong, I'm trying to diagnose myself!


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pain*in*my*gut Apprentice

I don't know what's wrong with me, but I'm beginning to wonder if I might have a gluten problem and possible Celiac disease.

I have been tired and not feeling well for years. But last summer I could still walk over a mile. Now I'm happy to get to the car. I'm severely lactose intolerant but I'd get sick sometimes even when I hadn't had milk. I was diagnosed with low vitamin D last summer. I started feeling worse a few months ago and it has gradually gotten to where I'm in horrible pain all over in the morning, stiff, hard to walk, dead to the world like a zombie. The pain and stiffness would get better after 1 or 2 hours. I could go to work, sit all day, go home and lay down. I'm 41!

I finally went to the doctor last week and my sed rate is elevated to 39. He is not concerned but suggested a sleep study due to my not getting asleep/staying asleep and feeling like hell. I have 2 aunts and 1 cousin that are off gluten due to sensitivities. So I started juicing and in just 3 days I have more energy, I sleep better, the pain and stiffness are nearly non existent.

Could I have celiac disease? Did any of you have elevated sed rates and similar symptoms? I looked up celiac disease and these are all symptoms I have: Abdominal pain, bloating, gas, or indigestion, Constipation, Decreased appetite, Diarrhea off and on, Lactose intolerance,

Nausea sometimes, Stools that float, are foul smelling, Unexplained weight loss (only 5 pounds the last few months), Bruising easily,

Depression or anxiety, Fatigue, Hair loss, Itchy skin, Missed menstrual periods (except very heavy the last 2 months), Mouth ulcers (comes and goes), Muscle cramps and joint pain.

Thyroid and rheumatoid markers/tests are normal.

Since my doctor is not concerned and thinks nothing is wrong, I'm trying to diagnose myself!

Yes, you sound like you could have Celiac. If you want a concrete diagnosis, you must remain on gluten and get the blood tests and follow-up biopsy. If you go off of gluten before you get the testing, the results could be falsly negative and you won't get an accurate result.

I have all of the symptoms as you! My sed rate was normal, but my CRP was very elevated (it's another inflamation marker). I am waiting on a biopsy to confirm, and then I will go gluten free for life.

Rocketlegs Newbie

I read in another thread about memory issues, muscle twitching, blurry vision and I have all those as well. It's been a joke that I have the memory of a goldfish (about 2 seconds), my legs and arms twitch and wake me up from sleeping, blurred vision off and on.

I'd rather go off gluten than go back on it. I never want to be in as much pain as I was. It was HELL. I hope I keep feeling better and better.

I started juicing Friday night along with adding rice, meat. I think I'm weaker than normal from lack of calories but I still feel about 3x better than I did before I did this!

beebs Enthusiast

I don't know what's wrong with me, but I'm beginning to wonder if I might have a gluten problem and possible Celiac disease.

I have been tired and not feeling well for years. But last summer I could still walk over a mile. Now I'm happy to get to the car. I'm severely lactose intolerant but I'd get sick sometimes even when I hadn't had milk. I was diagnosed with low vitamin D last summer. I started feeling worse a few months ago and it has gradually gotten to where I'm in horrible pain all over in the morning, stiff, hard to walk, dead to the world like a zombie. The pain and stiffness would get better after 1 or 2 hours. I could go to work, sit all day, go home and lay down. I'm 41!

I finally went to the doctor last week and my sed rate is elevated to 39. He is not concerned but suggested a sleep study due to my not getting asleep/staying asleep and feeling like hell. I have 2 aunts and 1 cousin that are off gluten due to sensitivities. So I started juicing and in just 3 days I have more energy, I sleep better, the pain and stiffness are nearly non existent.

Could I have celiac disease? Did any of you have elevated sed rates and similar symptoms? I looked up celiac disease and these are all symptoms I have: Abdominal pain, bloating, gas, or indigestion, Constipation, Decreased appetite, Diarrhea off and on, Lactose intolerance,

Nausea sometimes, Stools that float, are foul smelling, Unexplained weight loss (only 5 pounds the last few months), Bruising easily,

Depression or anxiety, Fatigue, Hair loss, Itchy skin, Missed menstrual periods (except very heavy the last 2 months), Mouth ulcers (comes and goes), Muscle cramps and joint pain.

Thyroid and rheumatoid markers/tests are normal.

Since my doctor is not concerned and thinks nothing is wrong, I'm trying to diagnose myself!

I had some of the same symptoms - GERD, consi, sudden lactose intolerance for 3 months and then it went away, constant painful nose and mouth ulcers, bad foot cramps and I also had elevated ESR and CRP rates all the time for what seemed like no reason - also elevated liver function and elevated bilirubin.

I'd be asking for a celiac panel and genes test...

Rocketlegs Newbie

I had some of the same symptoms - GERD, consi, sudden lactose intolerance for 3 months and then it went away, constant painful nose and mouth ulcers, bad foot cramps and I also had elevated ESR and CRP rates all the time for what seemed like no reason - also elevated liver function and elevated bilirubin.

I'd be asking for a celiac panel and genes test...

I've had lactose intolerance for 25 years. I've been sick a lot starting 25 years ago too... I mentioned celiac to the doctor's nurse and she said if you avoid it and feel better then keep doing that. Well gee thanks. She thought gluten only caused cramping and diarrhea. I think I know more just from studying these boards for a few day.

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    • par18
      Thanks for the reply. 
    • Scott Adams
      What you’re describing is actually very common, and unfortunately the timing of the biopsy likely explains the confusion. Yes, it is absolutely possible for the small intestine to heal enough in three months on a strict gluten-free diet to produce a normal or near-normal biopsy, especially when damage was mild to begin with. In contrast, celiac antibodies can stay elevated for many months or even years after gluten removal, so persistently high antibody levels alongside the celiac genes and clear nutrient deficiencies strongly point to celiac disease, even if you don’t feel symptoms. Many people with celiac are asymptomatic but still develop iron and vitamin deficiencies and silent intestinal damage. The lack of immediate symptoms makes it harder emotionally, but it doesn’t mean gluten isn’t harming you. Most specialists would consider this a case of celiac disease with a false-negative biopsy due to early healing rather than “something else,” and staying consistently gluten-free is what protects you long-term—even when your body doesn’t protest right away.
    • Scott Adams
      Yes, I meant if you had celiac disease but went gluten-free before screening, your results would end up false-negative. As @trents mentioned, this can also happen when a total IGA test isn't done.
    • Seaperky
      I found at Disney springs and Disney they have specialist that when told about dietary restrictions they come and talk to you ,explain cross contamination measures tsken and work with you on choices. Its the one place I dont worry once I've explained I have celiac disease.  Thier gluten free options are awesome.
    • Churley
      Have you tried Pure Encapsulations supplements? This is a brand my doctor recommends for me. I have no issues with this brand.
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