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I would just like to tell you about my recent medical history and I would like to know if any confirmed celiac cases could give me some advice.

As of March of 2012 my health went downhill. One morning I felt like I was coming down with the flu, I waited for a few days and I didn't feel better, so I went to the doctor and was diagnosed with pneumonia in my left lung. I took antibiotics and I felt fine for a month, then one day I just felt exhausted. I went back to the doc, got more antibiotics, and I felt better for a few more weeks. Then I got sick a couple of more times with bronchitis and ear infections. After a bunch of tests I was finally diagnosed with chronic or recurrent epstein barr virus. All of my lymph nodes (and spleen) were enlarged, I was exhausted, and I felt an extreme and unnatural amount of anxiety. The doc put me on antibiotics for a while, in case I had been exposed to Lyme disease. Fast forward a few months and I still have fatigue, brain fog, and abnormal blood work. The physical exhaustion has gotten better as has most of the strange anxiety. (I can tell you that the anxiety was something physiological, it was not a normal mental thing). I thought I had encephalitis or something. However, I still can't concentrate on things for very long without feeling worn out. My joints all make loud popping and cracking sound. Its like my bones are made of old creaky wood. This is the most unsettling symptom to me besides the brain fog. Does anyone else have creaky joints? I briefly had eczema on my forearms last spring, which I had never experienced before. I have a splotchy rash that sometimes appears on my chest, neck, and a bit on my face.

After a few months of having mono, and still no change in symptoms I tried a gluten free challenge on a whim. I tried to cut out gluten as best as I could. Some days I did feel better, but other days I felt like crap again. When I did go off gluten, I felt like my stomach was messed up (Which I attributed to all the antibiotics I had taken in the past) Prior to this I really didn't have any GI issues. So I asked my doc about celiac, and he acted like I was another hypochondriac crazy patient. He tested me anyways, but it came back negative.(However I probably hadn't eaten any gluten for a week before the test.) oops.

Prior to all of this, I was pretty healthy, a bit skinny, but I had a huge appetite. Now I feel like an old man. As far as family history, my mother and some others have hypothyroism, my uncle had colon cancer at a young age, and my grandma had rheumatoid arthritis. Autoimmune diseases do run in my family(probably on both sides). No one with known celiac though.

I also saw a rheumatologist based on my bloodwork, and he said it was a possible lupus case. However, I doubt this as I am a white male and I would assume that celiac would probably be 100X more likely than lupus. (I calculated this based on stats.) Also, my ANA was negative, and I don't think my rash is the same as the butterfly rash. Here are some of my blood test results. I was wondering if any of this is in line with celiac disease. I am really hoping its not lupus. Or some sort of infection (I lived and worked outside in new mexico last year, and I thought it could be valley fever at first, although that came back negative.)

I know that the bloodwork doesn't appear promising, but I swear that I wake up sometimes and almost feel 100% normal. And this feeling seems to coincide with a meal that I ate the night before such as stirfry, corn tacos, or baked chicken and mashed potatoes that didn't have any gluten in it. I have to make a new appointment with a new rheumatologist, since I recently moved because I ended up not enrolling in graduate school like I had planned on doing.

Neutropenia - borderline low

WBC - low

RBC - normal

Low complement c3 and c4

Lupus anticoagulant: PTTLA, and hexagonal phase phospholipid - high

anti-dsdna - mildly elevated

ANA - negative

EBV antibodies

Hepatitis - neg

lyme - neg

Sjorgens, anitsmith, RNP, anticardiolipn,antiscleroderma, anticentromere, CRP - all negative

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Welcome!

Do you know which celiac antibody tests were ordered? Did your doctor order nutrient testing? Celiac Disease prevents absorption of nutrients which can lead to all of the symptoms you list.

Have you had any thyroid testing? Many doctors test only the pituitary hormone - thyroid stimulating hormone (TSH). Request Free T3, Free T4 and thyroid antibodies to properly evaluate your thyroid.

I believe you should be evaluated by a GI that specializes in Celiac - do not remove gluten until all Celiac testing - including possible endoscpic biopsy - are complete. Take a written list of your symptom progression along with photos of skin issues to your appointments.

Do establish care with a new Rheumalogist as well. Autoimmune disorders tend to run together so it is important to have as many oppinions as possible when attempting to figure out a complicated puzzle.

Keep a food/symptom log.

Take pictures of skin issues.

Keep looking for answers - doctors can be dismissive when the majority of test for non-specific symptoms come back "normal". It is up to you to push for answers.

Good luck to you :)

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Thanks for the advice, I will ask about the other tests at my next appointment. My thyroid was fine, but they only took blood for the basic test. Also, I am not sure what celiac test was ordered, the doctor just told me it was negative.

"Normal" - thats all I want out of life right now, haha.

Thanks again, your response was very appreciated

Gene

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I agree that your thyroid needs to be tested. Hypothyroidism can cause aching/popping joints and bones, fatigue, mental fogginess, etc.

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    • Thanks for replying. You've been very helpful and given me some ideas of trying a few foods in small amounts. I wish I had rotated food months ago then it might not have got so bad. Thanks again and I wish you well.
    • Until my recent blood test results I've been having cinnamon and mint tea in the mornings, which seemed to have a positive effect calming the digestive system (and tastes good too!)  After the first step of diagnosis with high Iga TTg I took at look at the cinnamon sticks I make the tea with and it says "packed in a factory that may contain wheat, corn etc. etc." so that I guess would sound alarm bells for many I reckon. That said I'd imagine the way most of these herbs and spices are harvested isn't exactly gluten-free friendly yet I've seen quite a few recipes using it. How are people getting around this as I can't see any specific gluten-free certified cinnamon products out there? Really could do with my tea back P.S. I also have chamomile tea using the raw flowers which may have a similar background but seem to be less of a risk somehow?
    • If I do have to go back on gluten for a bit it'll at least be a temporary relief from the withdrawal symptoms (or at least what I hope are just withdrawal symptoms). Today's returning malady is acid reflux, something I'd thought I'd seen the back of recently. Really need that to calm down as PPIs the doctor gave before were evil medication and caused 10x more problems, possibly the worst I've ever felt whilst on those so won't be going back there! Although the scales seem to have stabilised in terms of weight loss in myself I feel like I'm wasting away at present, what with the random pulling sensations in muscles and tender head area I'm just scared for what other illnesses may be laying in wait related to the celiac genes  Think I'll head back for the ESR and CRP blood tests next week as the shoulder and temple pains are really worrying me right now, could just be the gluten intolerance but the other options are terrifying if not caught early. So much uncertainty, apart from the fact that none of this ever gets fully better (if at all)...
    • You're welcome! Good luck! And if you get nowhere there, remember, the higher you go, the nicer they get. Skip straight up to the top brass.
    • I'm sorry you've been having such a rough time.  I'm thinking you may have accidentally ingested something containing gluten, and that's what caused your reaction.  A lot of people will react quite severely to even a tiny bit of gluten.  That's why there is so much on here about avoiding cross contamination.  Even though you've been diagnosed with NCGS, you still need to live as though you have actual celiac disease, and be very careful not to cheat.  Your body will punish you for it.  :/  In the meanwhile, nurture yourself kindly and gently, just as you would after a severe bout of food poisoning or intestinal infection.  Comfort foods, like broths and soups and smoothies.  You might want to avoid lactose for a few months too.  Sometimes we lose our ability to digest lactose when our intestines are damaged and vulnerable like yours is right now.   And remember healing takes time.  So does learning the gluten free lifestyle.  Expect some setbacks occasionally.  You WILL get better!
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