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Horrible Relapse After More Than 3 Years

6 posts in this topic

Im looking for some advise here. I was diagnose with celiac in 2009.  Before I was diagnose I lost 20 pounds just in one month, Thank Good my gastroenterologist test me for gluten and it took just one month to get the right diagnosis to start my gluten free diet.


It took like a year and a half to feel normal, even after I started gluten free I had:

horrible pain in my stomach




sore joints



panic attacks

extreme fatigue...


My symptoms began to get better until most of them disappeared, maybe I had some nausea once in a while or some light stomach pain.


My problem is that maybe i got too confident on the variety of gluten free menus in the restaurants and started eating out like once in a week, gluten free pizza, or gluten free pasta and the diarrhea started again.  Now I feel horrible, my stomach pain is stronger than before.  The worst part is the extreme fatigue,I've been late for work almost daily for two weeks and I lost 9 pounds. I have no appetite, I'm having maybe two light lunches a day and minutes after I eat I need to go to the bathroom.  is frustrating feeling so bad after more than 3 years gluten free.  I thought I had won the battle against gluten, immediately I notice i got glutened I started eating just fruits, veggies and apple juice.  No milk, no meats, no fried foods, no tomato sauce, no processed foods...but I still feel horrible.  I had one ct scan, lots of labs and everything seems normal.  Im'having an endoscopy on Monday.  I have been feeling like this for two weeks and I feel like I can't take it anymore.  I have horrible panic atacks and stupid arguments with my boyfriend beacuse of my mood swings. 


If someone knows a way to get better please tell me, this is the first time in all this years that I feel hopeless. 


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if you were eating out alot, you were probably getting cross contaminated on a regular basis.  so, maybe you need to go back to eating plainly, cooking/preparing your own meals, no eating at restaurants.  be strict with your diet.  good that you're getting an endoscopy in case there's something else going on.  i hope you feel better.


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I think eating just fruits, veggies, and apple juice might be prolonging the problem. Those will give anyone D if that's all they are eating. Get some chicken or turkey and eat that. Maybe some potatoes.


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Are the blood tests they just took positive for Celiac antibodies? That would show you are getting enough gluten to give you a reaction.


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I went to the general dr. and she order me the regular test: CBC with Sed Rate, CMP, THS... because she insists it is something else, like the thyroid or colitis.  I had all the tests until I got an appointment with my gastroenterologist. As soon as he entered the office he told me "you are in pain" because the look in my face and he noticed my weight loss.  Mostly I have been eating fruits and veggies,

I simply swallow the food against my will because I have no appetite at all, and as soon as i start eating I feel weird bowel movement. Some times I need to leave the food without finishing to go straight to the bathroom.  I saw my gastroenterologist like a month ago because of some reflux and stomach pain,we both thought it was gastritis, but because of the weight loss we now  think that I had some hidden gluten.  I don't eat meat, but I ate salmon two days this week, and mostly raw veggies and fruits.. some home made mashed potatoes too. I usually don't eat at restaurants and I know it was my mistake to believe in the gluten-free menus  :angry:  This have been the worst two weeks of my life, I just will like to know when I'm going to get better 


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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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