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Gluten Intolerant Or Celiac? Or Something Else


ttownguy83

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ttownguy83 Newbie

Hi all

 

I was brought to this forum because I wanted to get some feedback on whether I might be celiac or gluten intolerant. I know this is obviously not a substitute for a real doctor and a physical but I just started a new job recently and don't have health insurance for 60 more days.

 

I'm 29 and Seemingly most of my adult life i've always had stomach issues, by that I mean onset cramping before rushing to the bathroom and having diarrhea or fatty, loose stools, gas, get bloated a lot and really bad stomach acid. I used to attribute it to eating fast food but even when I ate a healthy meal home i'd still have the problems, particularly when I ate Pasta or other Italian and bready meals. I distinctly remember my mom telling me when I was younger maybe I have IBS but I never paid much attention to it and just lived with it as "normal"

 

Well last year I went to my physician for a case of depression and one thing he noticed when doing blood work was I had an elevated level of liver enzymes and being concerned, he sent me to get an ultrasound. To my relief nothing was found and I was relieved but it puzzled him what it could have been. 

 

Fast forward a year later to about 2 months ago. My stomach problems started getting worse, as was my acid. The cramping started getting tighter and I was constantly having diarrhea more often. But what really hit me was one night after eating two servings of Pasta and 2 pieces of garlic bread, that night I woke up and started itching all over my scalp, face and hands, they began swelling up, my stomach felt like it was being turned into a knot and I rushed to the bathroom. The pain was so bad I even threw up a little but it was mostly all acid. This was the night I began wondering whether I was allergic to wheat.

 

So after that night i've been on a wheatless diet for 2 months. Honestly its like I discovered the fountain of youth, not only did my stomach cramping clear up, i've been more regular and even noticed other changes, not waking up tired and groggy in the morning or spending my days at the office in a foggy haze. At first I thought it might just be in my mind but I bought a brand new bottle of tums a few days before the incident and I have not opened them once, my stomach acid problems have completely gone away. Another major change is while I haven't lost alot of weight going by the scale yet, my midsection and stomach has shrinked considerably, at least an inch or two and my pants feel alot looser.

 

Well just for those who think it still might be something else, I did a test, I twice cheated and ate a burger from Wendys and again the pain, cramping and diarrhea set in, as little as an hour after eating it. Now I could chalk that up to it being fast food, but something interesting happened last weekend ,my friend made rum drinks and I sipped on those all night but what happened caught me for a loop, the SAME reaction I had when eating pasta that night happened again, my face and fingers swelled up again, my fingers and scalp itched tremendously again and cramping. I googled it and discovered while pure rum is safe, drink mixers and flavored rums have gluten in them. This has never happened to me when drinking.

 

So what do you think? Am I sensitive to gluten or is this a more underlying issue? I've never really had allergic reactions at all like I did with the itching and swelling, but the cramping i've had for years. Is it possible for the allergy to get worse as you get older which is why the symptoms i've only been seeing in the last year or two? Also is it normal to go off wheat and when you are exposed to it again like the case of drinking the rum, the allergic reaction is much, much worse than just eating eat day in and day out? Maybe someone could help shed some light on this. 

 

- Mike

 


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jhol Enthusiast

hi mike,

 

it certainly sounds like you,ve got something going on, whether its celiac, gluten intolerance or wheat allergy. only being tested for it will tell you for sure. once you,ve given up the gluten you certainly can have more severe reactions to even the smallest amounts of gluten you ingest. the itching and swelling sounds more like an allergic reaction, but every person is different that may be your reaction to gluten.

 

if i had one bit of advise to give you it would be to get a journal going now- write down everything you eat and any symptoms you get. it will help you out so much over the next few months and save you so much time. the other thing is - if you intend on getting tested when your insurance kicks in you must  be eating gluten for the tests to be positive.it really depends on you- do you need a definitive answer or are you ok with the fact that you seem to have found an answer to your problems.if you do need the tests for celiac you need to reintroduce a small amount of gluten every day. not sure on amount- a slice or two of bread?

 

some people can be gluten intolerant and have a wheat allergy at the same time.also you may find that other foods start to irritate you- a lot of people have to give up dairy for a while also.

 

theres the newbie 101 thread- have a look at that, it,ll tell you all you need to know.

 

welcome to the forums and hope you find out what you need to know. good luck!

cyclinglady Grand Master

I got tested only because I was going for routine colonoscopy and I already had thyroiditis and anemia.  I wanted a definitive diagnosis in order to help my family as I suspect several members have it.  Plus, I'd receive better support from them.  It's hard to deny a pathology report!  

 

My husband has been gluten-free for 12 years (yes, my family has had a hard time grasping that).  No formal diagnosis.  Docs just recommended that he stop eating gluten.  After a year of trial and error, he's been gluten-free and won't eat it to get a positive diagnosis.  As a side note, he has a "clean" health insurance record compared to me (who's been denied insurance many times and that's tough when you're self-employed!)

 

 

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    • Scott Adams
      If your tTg-IgA was 28 and positive is at 3, you are nearly 10x over the positive marker, so the most likely explanation by far would be celiac disease. I also do not understand why your doctor would not want to run the blood test, which is the normal first step in the diagnosis process.
    • xxnonamexx
      Is there a digestive enzyme that helps build a healthier gut? I see people taking them but not sure what really works
    • trents
      So the tTG-IGA at 28 is positive for celiac disease. There are some other medical conditions that can cause elevated tTG-IGA but this is unlikely. There are some people for whom the dairy protein casein can cause this but by far the most likely cause is celiac disease. Especially when your small bowel lining is "scalloped". Your Serum IGA 01 (aka, "total IGA") at 245 mg/dl is within normal range, indicating you are not IGA deficient. But I also think it would be wise to take your doctor's advice about the sucraid diet and avoiding dairy . . . at least until you experience healing and your gut has had a chance to heal, which can take around two years. After that, you can experiment with adding dairy back in and monitor symptoms. By the way, if you want the protein afforded by dairy but need to avoid casein, you can do so with whey protein powder. Whey is the other major protein in dairy.
    • jenniber
      hi, i want to say thank you to you and @trents   . after 2 phone calls to my GI, her office called me back to tell me that a blood test was “unnecessary” and that we should “follow the gold standard” and since my biopsy did not indicate celiac, to follow the no dairy and sucraid diet. i luckily have expendable income and made an appt for the labcorp blood test that day. i just got my results back and it indicates celiac disease i think 😭   im honestly happy bc now i KNOW and i can go gluten free. and i am SO MAD at this doctor for dismissing me for a simple blood test that wouldn’t have cost her anything !!!!!!!!!!! im sorry, im so emotional right now, i have been sick my whole life and never knew why, i feel so much better already   my results from labcorp:   Celiac Ab tTG TIgA w/Rflx Test Current Result and Flag Previous Result and Date Units Reference Interval t-Transglutaminase (tTG) IgA 01 28 High U/mL 0-3 Negative 0 - 3 Weak Positive 4 - 10 Positive >10 Tissue Transglutaminase (tTG) has been identified as the endomysial antigen. Studies have demonstrated that endomysial IgA antibodies have over 99% specificity for gluten sensitive enteropathy. Immunoglobulin A, Qn, Serum 01 245 mg/dL 87-352
    • JoJo0611
      Thank you this really helped. 
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