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Help! I Have Considered Getting Tested.
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4 posts in this topic

Hello. I'm a 19 year-old college student with some background and a few questions.

Beginning around age 11 or 12, I began to experience severe gas cramps 2 or 3 nights per week. This persisted until about a year ago, when I was first advised by a no-nonsense old doctor to try removing wheat products from my diet. He told me from a blood test that my IgA was a bit high, but everything else was okay. I stopped eating wheat bagels in the mornings and switched from bread to corn tortillas, and now cramping is VERY rare :)

I'm afraid that my problem might go beyond intolerance, though. I avoid gluten products for the most part, but still snack on graham crackers and even enjoy certain breads and hot-pocket type items a few times per week without much issue. But my mental health in the past few years has spiraled all over the place. I am severely obsessive-compulsive and locked into a daily routine that I never needed as a young child. My days are dictated by racing thoughts and rituals that have taken the pleasure out of traveling or eating out, so much that I avoid a number of social activities. I think that there might be a biological reason that this is happening, because I grew up in and continue to live in the best of circumstances, with a steady, successful academic life and a wonderful family. But enough of the story; is it possible that an adverse reaction to something like gluten could harm my...brain? Has anyone experienced anything similar?

I was also interested in getting tested for celiac disease because of a few other typical symptoms I have experienced, including mouth sores as a child and a prominent, permanent yellow spot on my bottom front tooth that has baffled dentists over the years :rolleyes: . Finally, my menstrual cycle is irregular and did not start until after age 15. Any thoughts?

One more thing: For fun, I was genotyped by 23andme a few months ago (I am a NERD for that stuff :lol: ). I do have a marker for an increased risk of celiac disease (HLA-DQ1, I think), but from what I've read it's certainly not an absolute and merely increases risk from 0.2 to 0.6 percent.

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You will undoubtedly receive quite a few responses on this topic--many people have posted here complaining of neurological problems associated with celiac. It was only recently that neurological issues such as bipolar, seizures, migraines, ADHD, schizophrenia, depression, memory glitches, etc., were discovered to be linked to celiac. Apparently, some/many of us suffer from decreased bloodflow to the frontal lobes and even have plaques/lesions throughout our brains. At a celiac conference I attended in Minnesota last year, the speakers emphasized that while celiac has long been accepted as a gastrointestinal disease, it is, in fact, a neurological disease. Did you know that the gut has more neurons than the brain? Did you know that 90% of our serotonin is produced in our guts and only 10% in our brains? No wonder we have neurological problems!

You're on the right track, and if you decide to go entirely gluten free, you might find your answer as to whether or not gluten is causing your issues.

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My main symptoms of celiac are neurological - jitteriness, tingling in my legs, anxiety, irritability, and brain fog. If I get gluten in my system, I can't remember things, have trouble doing math (which I'm good at), and can't remember words I want to use when talking. So yes, your brain can be effected.

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I am not diagnosed celiac but I do suffer all the typical symptoms when I consume gluten. A gluten intolerance can be just as severe as celiac.

Affecting your brain...TOTALLY! I get headaches/migraines, brain fog where I live in a haze and can't process things correctly--so bad my sentences get messed up.

As far as the mouth sores go I noticed that I went from having either a kaner sore or a cold sore three out of four weeks of a moth to not having one since about a month after I went gluten free. I don't think this is any coincidence! So your mouth sores could be part of it.

The menstrual cycle is definitely a possibility. I know mine was whacked out and my doctor actually did an endoscopy where she stuck 2 cameras inside of me and looked around for signs of endomitriosis because there was no other medical reason for my cycle to be so screwed up. However, nothing appeared to be wrong and I was a mystery to my OBGYN.

The only way to know for sure is to just cut it from your diet completely with no graham crackers or hot pockets :) It's hard at first, but when you feel so much better things are okay and your body starts to recover there was nothing worth eating to go back to that feeling. Just be sure that you get your tests done before you start going completely gluten-free. You need gluten in your system for awhile for the test to be run accurately.

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    • Hi lolobaggins, Yes, it is not unusual to have symptoms that come and go after going gluten-free.  Edema (swelling) can also be a symptom of an allergic reaction.  Fatigue is not fun but remember your body is trying to heal a major organ, your gut.  So some rest might be a good idea.  The immune system response is going to keep going for several weeks to several months.  Each little bit of gluten kicks the immune response off again and extends the healing time.  So it's helpful to be very careful with your diet. Meats, vegetable, and nuts are good foods to eat at the beginning.  And whole foods rather than processed foods.  Dairy is often a problem until the villi are healed.  After a few weeks if things are going well you can try to add one new food a week and see how things go.  But take it slow and easy.  The fewer foods/ingredients we are eating the easier it is to identify problem foods. Welcome to the forum!
    • Welcome to the club that you never wanted to join!  (I plagiarized that from someone else here but can't recall who so I can't give credit to them.) Anyway, there is a steep learning curve to being gluten free.  It takes time to learn to read labels.  It takes time to heal (like months to YEARS).  Symptoms can wax or wane.  You just have to keep moving forward.  Give yourself time to heal and do not worry about the gym right now.  It will come back later, I promise (from a gal who cycles, swims, and runs).   Read our Newbie 101 section pinned at the top of the "Coping" section.  It contains valuable tips about cross contamination and hidden sources of gluten.  Read, read, read, the internet from reliable sources (not crazy bloggers).   You will feel better soon.  
    • Ha!    That happens to me all the time!!!!!  It drives me crazy!
    • "Accidentally marked them soy free".  Are you kidding?  That's fraud!  Consumer Reports just issued a huge report this month on supplements.   Yes, everyone thinks they are all "natural" and therefore safe.  Doctors and nurses recommend them all the time, but they can do a lot of damage.  Anyone can start making them in their bathroom and there's literally no regulation.   Geez, it is safer to buy food products (no gluten ingredients listed) from companies like Kraft and ConAgra because they are regulated more!  http://www.consumerreports.org/cro/magazine/2016/09/index.htm What about the probiotics?  Columbia University tested about 20 of them and found that over half had gluten in them.....enough to make celiacs  remain sick. https://www.sciencedaily.com/releases/2015/05/150515083232.htm Think twice about taking supplements.  Make sure you really medically need supplements.  I prefer certified gluten-free if I need to take them and I take nothing right now because all my labs are okay!  You have been on the gluten-free bandwagon for many years (member here for years).  Your doctors should be looking at other things that might be making you sick still.  Something is wrong!   That's my two cents!    
    • Hi Schlafentzug, The usual diagnosis process is a blood test for antibodies first, followed up by an endoscopy to check for gut damage.  You have to eat gluten for 12 weeks before the blood tests. It sounds like your brother may have celiac disease also.  His gut lining villi were damaged by something, and villi flattening  is a common celiac disease indicator.  Being shorter than other family members is also a common indicator. The excessive gas is probably from bad digestion.  The gut damage interferes with proper digestion and some enzymes aren't made.  Lactase is made by the villi in the gut. You should definitely get tested and before going gluten-free IMHO.
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