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Could It Finally Be This?


Crash

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Crash Rookie

Hey everyone. I am 24 year old male with no health insurance for the moment. Other than the issues I describe below, I am (or was at least...) perfectly healthy, not overweight or underweight, athletic, etc.

My story begins when I was a kid. Once a week or so for as long as I can remember, I would get really bad cramps/abdominal pain and D. The rest of the time I was pretty normal, although I had really bad anxiety issues up until middle school. High school went by fine, but I always had the same pattern of once a week like clockwork having a messed up stomach for a whole day. I got into college, had a great time, but things started to change a little here. I had constant gas now on top of my once a week battle with cramps and abdominal pain. It wasn't bad enough to startle me at first, so no diet changes, still. Always maintained a well rounded diet (plenty of grains, breads, etc.) although I could eat a lot, and was known in my circle of friends for it. My senior year, the gas began to smell worse and worse, and would cause me to shy away from social situations, especially in the evening when it seemed to be the worst, so I started to take notice. Clean bill of health still.

Right after college I got into grad school in Florida. My girlfriend and I moved in together. This is when I really started to notice some things. I had nice, normal BMs less and less frequently, being replaced with either cramps and D, not going for a few days, or greasy stools with a feeling of incomplete evacuation, and I began to feel bloated. This was back when I still had health insurance, and I ended up with a diagnosis of IBS and was sent on my way, and was told to keep my stress level down. I finished my Master's with no resolution of symptoms and moved to Texas to work on my PhD. When in the process of moving to Texas, I got a new symptom, which has precipitated my desperation. I had been very self confident ever since high school and nothing ever really bothered me. However, I began to have extreme nausea and panic attacks related to how bloated or cramped my stomach/intestines felt. Some days were fine. Other days I could barely get out of bed from the panic, most of the time feeling the need to vomit but not always actually doing so (gagging, coughing, belching). This is when I began to suspect diet. I cut out coffee, fructose, and all forms of lactose, switched to rice and soy milk in my nice whole grain cereal, but after weeks, had zero change in symptoms.

Cut to this past December, my stomach was doing its thing constantly, I could always feel things moving, extreme bloating, nausea, a feeling of being unable to breath and a lump in the back of my throat, both of which are from non-burning acid reflux. I was in a constant state of panic because of the end of the semester blues: Finals, projects, committee meetings. I felt like dying, but I knew this wasn't a psychological issue, I know it is related to the state of my digestive tract. The holidays passed, and here we are almost a full semester later, it has been touch and go all the time. I have to keep antacids and cough drops on my person at all times to keep the nausea and gagging sensation at bay. I wake up every morning feeling awful, totally bloated. I have to stand in the shower with the hot water on my abdomen to feel good enough to get dressed and go to work. I can sleep 8 hours and be exhausted. If I have a couple of beers in the evening I wake up dripping with sweat and panicked. Then I read a blip about IBS and, surprise, celiac. I couldn't believe it had never clicked before. Last night i had another episode of cramps, D and anxiety/nausea/panic attack, and found this website. Your thoughts are appreciated.


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MNBeth Explorer

Absolutely it could be this. I'm not saying it is, but it's definitely something that needs to be looked into.

I think I'll leave it to others to recommend a course of action, though. I'm sure some good advice will be along presently...

lizard00 Enthusiast

You have two choices: You can get tested, if that is an option for you right now since you mentioned you don't have health insurance. If you don't care about a formal diagnosis, try the diet for 6 weeks or so and see if you notice a difference. Remember though, if you go off gluten for any length of time, you pretty much ruin your chances of getting an accurate blood test.

You have to make the choice that's best for you and your circumstances. I wish you well :)

Crash Rookie

Thank you for your replies. It's interesting how, now thinking about it, I eat gluten every single meal almost. I won't have health insurance again until the fall, and if I can start to feel better now, I am going to go that route. Is there a link to snack foods that are gluten free and relatively unprocessed? I will start off major meals with just super simple stuff, chicken, fish, veggies, potatoes, etc. and see how it goes.

Crash Rookie

I'm on hour 48 of no gluten. I feel like I'm living in a daze. Very weird.

RiceGuy Collaborator
I'm on hour 48 of no gluten. I feel like I'm living in a daze. Very weird.

There is often a period of withdrawal when first going gluten-free. Perhaps that's what you feel?

Hang in there. I'm sure you'll soon know if gluten has been bothering you.

CMG Rookie
I'm on hour 48 of no gluten. I feel like I'm living in a daze. Very weird.

I think the "brain fog" is a relatively common symptom, and like Riceguy said, could be gluten withdrawal. I had it throughout my gluten challenge and for about a week after I went gluten free. It's now my first tell-tale sign when I have gluten by mistake.

Good luck!


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    • 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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    • GlorietaKaro
      One doctor suggested it, but then seemed irritated when I asked follow-up questions. Oh well—
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