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A Story And A Question! Testing Symptoms
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Hey guys, this is my first time posting on this Forum so i'd figure I would first tell my story so you get some background on my situation to better assist me with my question!

 

I'm 24 years old, male that has tried to be gluten free for about 4 months. I eat extremely healthy. I never got tested for celiac or any gluten allergy, I never had the money for the test or to see any doctors. I'm currently in school to become a dietitian, so I felt up to the challenge to fix myself. It all started july of 2012 when I was noticing my stools where getting wierd and weren't normal logs anymore. alot of diarrhea and problems. So, like any college student I was like maybe it's the drinking, or some unhealthy food I was eating. So I just started to cut foods out and eatting super clean; but nothing was really fixing it. and it was just getting worse; I would get horrible pressure in my stomach/small intestine, this pressure wouldn't go away. and I would start getting dizzy sometimes.

 

Anyway, fast forwarding In January of 2013 I met someone who was gluten free and after talking to them I was like, I guess I'll give it a shot. By this time I was already eating extremely healthy since I was doing everything possible to fix this, so It wasn't that hard to just start cutting out wheat and gluten. Within a week of going gluten free, all my symptoms went away. The pressure in my stomach even went away and slowly my stools started to become fuller. Within a month I felt stronger and healthier. So, I was like maybe I found out what fixed it!

 

So for the past 4 months I kept up with this diet; Wasn't nearly as I thought. But, sometimes I would still have problems here and there but in general it was alot better. So randomly, 4 days ago I was eating this new gluten free soup that I wanted to try and the pressure came back within 15 mins of eating it, full on as if I just ate a piece of bread or something. No idea what happened. So confused, tons of gas and all this other crap. So, after a day it went away; and I was thinking what the hell was that since it didn't have any wheat or gluten ingredients in it, to be honest, it didn't have much of anything. So, in the back of my head I always realized that when I cut out gluten I also at the same time cut out all lactose from my diet. I actually drank lactose milk because that's just what we had. So, I was like, "maybe I just had a lactose problem this whole time and not gluten". (mind you the soup didn't have any milk in it; I was just freaking out, haha) With this I tried a small piece of bread with one of my meals at like 6pm and waited for any symptoms to occur. Suprisingly, nothing happened.

 

The next morning I actually had one of the fullest stools I have ever had. Basicly this gave me no help and I was now more confused. I continuted with my day and completely forgot about the bread that I ate last night and went to class eating my normal gluten free meals. Around 12:00 pm I was eating a normal salad and into half way of finishing it the pressure came back; but it felt like just gas; It would come and go within a second to a min. When I finished my salad and continuted my classes my stomach was having a hard time digesting something. I was having massive gas during class; and I was worried that I was going to have one of my IBS attacks, which is what I use to call it when i didn't eat gluten free. I toughened up and made it all the way back home before getting nauseous and having to run for the bathroom. Needless to say this was not a normal stool. Finishing my day with a little upset stomach, I went to bed completely stressed out and had no idea what triggered that event considering that if it was the bread that would have been 18 hours since I digested it. As I said before in the past if I by accident digested something that was bad I would know within 30 mins tops. I'm incredibly good shape and have a very fast metabolism.

 

In conclusion, I know this story is super long but I would appreicate it so much if someone could maybe shed some light on this situation. I'm open to answering any questions you may have. I'm a body builder so I know extactly what goes into my body and when. I write everything down and know the extact amounts of everything. I can be really precise on my diet if someone needs any information. Just to add, this morning, I didn't have a great stool either,  but it was okay. my stomach felt a tiny bit upset after eating gluten free oats for a few seconds, but it's been almost 2 hours now and i'm feeling healthy and well.

 

ps. I'm surpised I wrote this much haha. Thanks again so much to anyone that helps!

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    • Hi Lisa, I completely understand why you didn't do a biopsy on your daughter.  I went through the appendix thing myself...not fun!  I was diagnosed with just bloodwork and no biopsy, but did have the full panel.  I would go back to your PCP and ask for a full panel to include TTG, EMA and DGP tests.  Since she was already willing to test you, I'm sure she would be willing to order these.  Good luck!
    • katesyl.........this is an older topic so the OP most likely won't answer.  I can, however, offer a piece of advice for you. Just going gluten free will probably not drive your inflammation markers down into normal.  It does depend on how high they were to begin with but with all autoimmune diseases, there will be inflammation going on forever.  Get used to wonky blood work because most of us will have that issue. I have 4 autoimmune diseases in total and, although I have driven certain inflammatory markers way down, my recent sed rate number was elevated.  The normal is supposed to be 30 and under in a woman my age but mine is 50.  With 4 AI diseases, I doubt it will ever be normal and I don't let it bother me. I am not willing to take major meds at all and use more natural anti-inflammatory supplements.  You can do whatever you feel comfortable with in regards to treatment but don't expect normal numbers with Celiac Disease. Inflammation will improve but normal?  Most people never get there completely.
    • My daughter's PCP did not go against anything, she offered to do the biopsy - I was the one opposed to it. My DD, who was 10 at the time had just spent 3 weeks in the hospital, very sick with a ruptured appendix, then had 2 surgeries a few months after. I didn't see the need to put her through anything else with her numbers so high and all the classic symptoms. Apparently, in some other countries, if your numbers are all high, they forego biopsy. Anyway, I was really asking about myself and whether I should push for add'l testing. I am still new this this and trying to get up-to-date and wasn't sure if my PCP should conduct other blood tests before I go completely gluten-free. I have been somewhat gluten-free, but not entirely. I have no problem going gluten-free, but want to make sure that I am doing it for the right reasons. I wasn't sure if the Gliadin Abs IgA was sufficient to point to Celiac and possibly doing a biopsy for me. Or if additional blood test would make more sense.   Thanks!!
    • I would like to know if you have found out the source of your inflammation yet. I'm gluten free three years but my inflammation test was high.
    • Personally, I would ask for the full Celiac panel and see what that shows.  I mean, the full Monty, not just cherry picking testing.  On the full panel, if the tTg and the EMA come back positive, that is a diagnosis without biopsy.  This is how I was diagnosed and there is absolutely no doubt I have Celiac.  I presented with classic celiac so it was a no brainer with my blood results. If you cannot stick to the diet religiously, without cheating, unless you have a biopsy picture, then I would go on to have a biopsy.  Like your daughter, I was way too sick to have one done at the time.  They would not have agreed to use sedation because I was so anemic and malnourished and that ended that!  Good luck with whatever you decide!
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