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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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      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
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      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
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      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
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