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Help! I Have Considered Getting Tested.

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 AWOL, Since you weren't able to complete the 2 weeks gluten challenge for the endoscopy the results are not necessarily reliable.   So to be err on the side of caution I think you should assume you have celiac disease.  Your doctor should not assume you don't have it either since the challenge was not completed.  He has no proof that you don't have celiac disease.  He does have evidence that you have negative reactions to eating gluten though.
    • Hi Ironic Truth, Thanks for Replying. Wow I get bad joint pain too. So my opinion especially if he is eating gluten is to get him tested. I wish I had been tested when I was eating gluten 8 years ago .  I had tried 8 years ago initially to figure out what the heck was going on with me and my immune system. I started with a GP, went to Allergist/Immunologist etc. I gave up 4 doctors later when nothing seem to be found and you sense they start thinking lady you're a nut job . My cousin a diagnosed Celiac took over 2 years to be diagnosed and she is a nurse. My husband said for years "I think bread is bad for you" and in a desperate attempt to help myself -I gave up wheat after 2 weeks felt better 2 months later I went total gluten-free and felt very much better that was 4 years ago. So I have suspected NCGS or Celiac for a few years now. However getting someone to test you for it when you were classified IBS 20 years prior-well as is chronically heard on the forums here is perhaps the biggest challenge of all. One then just finally says ok I will just try this gluten-free thing myself. I was gluten-free for 3 1/2 years and improving. Then  I got gluten-ed in March of 2016 and I had worse symptoms then ever the joint pain arrived. I went to a new allergist who refereed me to another Allergist/Immunologist who deals with Celiacs and Food Intolerances. I did see a Rheumotologist in July 2016 since the muscle and joint pain was still lingering, who tested me and reported no antibodies. Back to the specialist who did more test and suggested the gluten challenge. It's likely me failing to complete 2 weeks caused it but the symptoms got real bad and I thought I'm going to have worse issues if I don't stop this.  Today my fingers are just starting to heal they were peeling during the gluten challenge among all the other symptoms I get, which I attribute to dehydration. The dry peeling fingers did not improve until I got the IV the day of the scope. Bizarrely I was looking forward to the scope hoping I'd get an IV with Meds and fluids becaus eI felt I needed it. I did see one abstract, I can't get my hands on the full article as you stated their is a link: Dig Dis Sci. 2005 Jan;50(1):126-9. Celiac disease and intestinal metaplasia of the esophagus (Barrett's esophagus). Maieron R1, Elli L, Marino M, Floriani I, Minerva F, Avellini C, Falconieri G, Pizzolitto S, Zilli M So I will pursue the path of monitoring the  Barrett's. Despite no official diagnosis for me, you are right Gluten is bad for me, I should avoid it, I will, and I'll stay on the forums. Good luck with you Boyfriend he is lucky to have you looking out for him.
    • Hi Sunshine, There is a program called a 504 plan that some schools will follow if you get one approved.  It helps the school identify proper ways to deal with a child's particular needs.  Probably it is helpful to have a 504 plan, but they may require a formal diagnosis for it.  I suggest you talk to the school and ask them about it.  Tell them the situation with the kid and about the stress he would need to go through to get diagnosed.  They may be willing to work with you without a formal diagnosis.   I am not saying you absolutely have to have a 504 plan for him.  School districts vary and some may be more accommodating than others.  A 504 plan may give you certain rights, but I  am no expert on them. The gluten challenge is 12 weeks of eating gluten for blood tests.  The payback for being formally diagnosed is questionable IMHO.  Treatment is the same regardless, eating gluten-free for life.  One thing to be aware of is that celiac disease has a genetic factor.  So he got the gene from one of the parents.  Anyone else in the family could have celiac develop at some point.  So testing every couple years for all family members is a good idea. Welcome to the forum!
    • Thank you everyone. I appreciate all of the information and support.  I am feeling overwhelmed right now and it was really getting me down yesterday. I don't feel so hopeless now. 
    • Okay. I think I will start with an allergist and a dietitian. 
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