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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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    • Mari
      Years  ago a friend and I drove north into Canada hoping to find a ski resort open in late spring,We were in my VW and found a small ski area near a small town and started up this gravelled road up a mountain. We  got about halfway up and got stuck in the mud. We tried everything we could think of but an hour later we were still stuck. Finally a pickup came down the road, laughed at our situation, then pulled the VW free of the mud. We followed him back to the ski area where where he started up the rope ski lift and we had an enjoyable hour of skiing and gave us a shot of aquavit  before we left.It was a great rescue.  In some ways this reminds me of your situation. You are waiting for a rescue and you have chosen medical practitioners to do it now or as soon as possible. As you have found out the med. experts have not learned how to help you. You face years of continuing to feel horrible, frustrated searching for your rescuer to save you. You can break away from from this pattern of thinking and you have begun breaking  away by using some herbs and supplements from doTerra. Now you can start trying some of the suggestions thatother Celiacs have written to your original posts.  You live with other people who eat gluten foods. Cross contamination is very possible. Are you sure that their food is completely separate from their food. It  is not only the gluten grains you need to avoid (wheat, barley, rye) but possibly oats, cows milk also. Whenever you fall back into that angry and frustrated way of thinking get up and walk around for a whild. You will learn ways to break that way of thinking about your problems.  Best wishes for your future. May you enjpy a better life.  
    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
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