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Please Help, Celiac Symptoms Plus Other Autoimmune Disease?

4 posts in this topic


I am new to this site and was diagnosed with celiac's disease almost three years ago. Am wondering if I developed another autoimmune disease within the 9 years I thought it was just IBS... because even on the diet I am feeling very sick almost every day. Please help...

I felt much much better when I started the diet, felt like I had a lot of energy, no more constant infections, no more rash, started to have restful sleep, etc. But a few months later I caught EBV. I had mono for two years and had to go on antivirals because my IgM was positive for a long long time (should only be two weeks!), was diagnosed with chronic EBV, but antivirals brought virus down to a low level and I don't think that is causing current symptoms. (I had some of the kidney symptoms well before I had the virus, and I had flare-ups of symptoms while on antivirals) so the symptoms are:

FEVERS, swollen lymph nodes in the back of my neck, tingly/malaise/sick feeling in my whole body, dark urine, blood in urine, burning to pee, increased urine frequency, kidney pain in front under ribs on either side, flank kidney pain which makes me feel nauseous, MUSCLE WEAKNESS, pain in muscles but mainly with pressure/ not always with use, pain and stiffness in joints, joint stiffness, (hard to unlock door, start car from pain), skin hurts to touch, RAVENOUS HUNGER to the point where I can't get a good nights sleep and am constantly waking up with hunger pains, fatigue.

these symptoms flare up with stress or exercise (with no abdominal symptoms), or after eating gluten...usually a few days after I have "the poops". The symptoms bother me almost every day in a year because flare-ups can be months long. Tests have shown ketones in urine, scaring in kidneys, high CPK, weird test results that say I'm having rhabdomyolysis and dehydration when I look them up...of course doctors have been horrible and no help, and my ANA is negative so they ignore that I may have another autoimmune issue.

It's been really hard mentally since I can't exercise.. the last time I was feeling better I went to yoga, but woke up with really weak muscles, a high fever, and swollen lymphs nodes the next day. Kidney and urine symptoms followed these. Same happened after a night of dancing once. . Joint/muslce pain with pressure just started up this year, and the kidney/muscle weakness issues have been bothering me for 6 years.

does anyone deal with similar issues? and what is it? am starting to think I have polymyositis :( or something similar and scary. Or does this sound like celiac symptoms of someone who is super sensitive? please help!! thanks and Merry Christmas :)


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Some of those sound like classic UTI infections (burning, dark coloring, frequency). :(

I can't remember how many doctors it took for them to figure out my gallbladder problem. Just keep with it, you'll find one that can help ya, i'm sure.


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Hi, I had a neighbor who was diagnosed with porphyria and had a lot of the same symptoms as you. I no longer live near her but she had some other autoimmune issues too. It is a rare condition but it effected many of her organ systems including her kidneys and I remember her saying that it took years for her to get the right diagnosis.


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I don't think your symptoms are from Celiac. (everyone can have individual reactions, but this is not common amongst the chatters here)


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    • I have the same symptoms.  These symptoms have overlapped other issues that I have and have been left untreated for far too long. Now the pain has gotten worst. My GP believes it's my hiatal hernia.  I have pain below my breastbone, pressure pushing up my chest/throat, dizziness and nausea. 
    • Usually I'm using apps to tell me what celiacs have thought about the restaurants in the area and repeatedly eating at a few different places I haven't gotten sick. Now that I think about it, gluten was a definite possibility. I ,however, just got all negative results from all the following tests so I'm guessing I'm doing ok on that front. -Basic metabolic panel -Liver enzyme panel -CBC -Serum IgA -Tissue transglutaminase(tTG), IgA -Tissue transglutaminase(tTG), IgG -Thyroxine(T4), free direct serum -Thyroid stimulating hormone I thought the same thing about positive antibodies and non-celiac sensitivity reading this; l'm seeing his nurse practioner in two weeks so I'm going to take this and basically argue with what he said and see how that goes haha. I'm gonna guess not real well. I'm going to push being tested for other autoimmune diseases in addition.  
    • I was dx with duoedenitis end of August. No mention of a stomach, esophagus or duoendal ulcer. Just a small hernia. Less then 2cm. But I have a LOT of pain right below the breast bone and I jumped when it was recently touched on exam. I can even feel a small bump in the area. I feel so dizzy and unwell, like some kind of bacteria is invading my brain and am very queasy still.  My heart still feels weird too.  Bloodwork normal, a bit low on protein which is unreal because I get a ton of it but it is always is low if I have not eaten. Mildly elevated myeloycytes and basophils. My GI will probably not see me for a week or two, my primary care put me on sucralfate.  As soon as the food hits my digestive system I feel really weird all over, stomach, chest, throat, head. Just feel like I have this horrible thing infecting my body.  Did anyone feel ulcer pain and have it NOT be an ulcer? I suppose one could have developed since August. 
    • Hi AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
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