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What To Do Now?
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I guess I am just mostly venting because I'm frustrated that I can't figure out what is wrong with me. Last fall I was having gastro issues (bloating, D, cramping) and also some skin issues - severly itchy bumps that would come and go. I went gluten-free (I realize now that was dumb before seeing a doctor) and the GI issues resolved almost completely except I was still having loose/soft stools and occasional undigested food. I went to a GI doc because of these issues (at this point it had been going on for about 3 months and I also still had random itchy bumps) just to be sure there was nothing else wrong and she couldn't find anything. Obviously she didn't do any celiac tests because I was still gluten-free at that point. She did say I had a slightly elevated folate level which could indicate bacterial overgrowth and also I was slightly deficient in vitamin D. Ironically by the time I had my GI appointment (literally that day), I had a "normal" stool and did for the couple days after. I had also cut out dairy for the past month or so.

So, I decided to start eating gluten again because I really didn't have any reason not to. Yes I felt better without it but I also thought maybe it was just a virus or bacterial infection or something that took a long time to get rid of. I am not so concerned with a definite diagnosis if it is celiac but I am more concerned with some diagnosis if it is NOT celiac if that makes sense, so I am back on gluten just to try to rule it out as a cause. I am still off dairy because I don't want to add both back in at this point, although I have had a little greek yogurt and small amounts of hard cheddar.

So here's what has happened over the past 10 days eating gluten. I have no pain really, but some bloating. I don't know what is "normal" for someone's stomach to bloat after they eat but in the morning my waistline is about 27 inches and then after breakfast it is about 29 1/2 - 30 inches. I have been eating Cream of Wheat for breakfast but this morning I had just a piece of whole wheat toast and a smoothie and my tummy was 30 inches.

I still have "loose" stools and I only go in the mornings. Usually the first one is just loose and unformed and then I may go again once or twice and those are considerably looser, and usually very thin.

I still have the itchy bumps but they are coming in different forms now. I still have the tiny blistery types ones occasionally but I am now getting bigger more bug bite-looking ones. I have two on each arm now and had one on each side of my abdomen earlier this week. They do not look like typical DH but I have no idea what they are. They have sort of like a little indentation in the middle and after they itch/burn they are also sore.

So I guess I am just confused and a little worried because obviously something is not right. It doesn't appear to be celiac but also there doesn't seem to be anything else wrong that shows up on any tests. I am temtped to go back to being gluten-free but even then I had the loose stools and tiny bumps. Maybe I didn't wait long enough? But if it is gluten wouldn't I be having more severe reactions now?

I know this is all rambling but it helps to just get out my frustrations!

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I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

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I would consider seeing a dermatologist at this point, your rash does sound like DH. I would ask a Dermatologist to biopsy it...I would tell them you had GI issues for months/years, and that they were unable to determine a cause, and that you went gluten free...and now that are adding it back in your rash is changing/worsening. Ask them to biopsy it (they should biopsy it along a active lession). I would also ask the dermatologist to do the blood test for celiac, a FULL panel.

Thanks for your advice! And thank you for reading my long post! :)

I think I will try to make an appointment with a dermatologist.

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    • Marip, Have you been diagnosed with celiac disease or Non-celiac Gluten Intolerance?  I notice you joined in 2014.  Did you ever go guten free?  How can we help?   Sorry, I'm not a stool expert!  You could Google it...  Malabsorption?  Standard lab tests that check for anemia and vitamin deficiencies, etc.  should help make that diagnosis.  
    • You can eat just a slice or two (or equivalent) of bread a day for accurate testing.   I understand about the high deductibles.  We're self-employed and we pay for our health insurance. 
    • Sure, if it's gluten free, then fine.  I am very allergic (like anaphylactic) to ibuprofen and aspirin.  So, in my case, I would just tough it out.  Go to bed.  Sleep it off.....eventually. My money is on the garlic and onions.  I can't consume those either (damn that zonulin/leaky gut -- google it along with Dr. Fasano).  I just season with salt, pepper.  Boring.  But no gut issues.  I'm hoping like my lactose intolerance (resolved), that I will get garlic and onions back.   Finally, sometimes just eating anything can hurt when you still have intestinal damage.  Hopefully, you'll feel better in two or three hours if it's celiac related.  Longer if it's an intolerance (leaky gut thing....) Hugs!      
    • I read on their website that all Advil is gluten free, I had such bad pinching cramping today(which I don't why since I prepared all my food at home today.) I made a pot roast, salt garlic, onions...No gluten but still pain, That's the only thing I ate today..I don't eat breakfast or anything.   Anyways.   Is it a good idea to take Advil for the cramping? That's how I would describe it like someone is reaching inside me and pinching me and twisting my insides.    This is what I took  
    • I'll give my PCP a call tomorrow and see what they can offer. My only worry is the expense as anymore tests will put me behind in being able to afford to see the GI. I have high deductible insurance but get money put into my HSA. I'm still trying to pay off the CT scan though. Which is why I'm trying to pick and choose which poses the greatest risk for me right now and what can wait. (Though I would prefer not to wait on any of it.)

      I really do hope its only IBS. Though I always worry IBS is more or less a doctors way of saying "I have no clue" at that point. :C

      Again, I'll be sure to give my PCP a call tomorrow then and see what the options are. I can feel a lot better trying the blood work first. however, once that is done, do I still need to be on a gluten diet before the endoscopy? Also, is it ok if I still mildly reduce the gluten. As in, can I avoid a whole wheat pasta dinner, but still be eating the peanut butter crackers? That sort of thing. Again I guess that is more of a doctor related question. I just wasn't sure if in order to raise your chance, you have to mass consume gluten or not. (Its already in just about everything to begin with.)   --Edit--
      I just now reread the part that you still need to be on the gluten foods even for biopsy so I'll be sure to do that too.
       
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