Frequently Asked Questions About Celiac Disease
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TheTokingTick

New Member. Doctors cant nail down whats wrong.

By TheTokingTick, in Celiac Meeting Room

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TheTokingTick    0

TheTokingTick
Posted

TL;DR 

Mom is a celiac. Father, Brother are lactose intolerant. Sister has IBS problems as well.  

I believe I have gluten allergy, even though every doctor test is negative. But I do have geno-type for celiac.

Marijuana has become my only solution to stop the pain and get hours of relief. No other medicine works. but pot lets me go to work, without crapping my pants and getting paid to s$#&.

Anyone else in my particular situation or does everyone else feel it differently? 

 

 

 

Hello, 

My name is Ryan and I am a twenty-four male, 300lbs, 6ft 4in. Ive been haunted by stomach/head aches for almost my whole life. Gaining depression in middle school, which downward spiraled by the time I was 20-21. Ive been diagnosed with Chronic Lyme Disease which is, I guess, controversial among physicians on whether or not it is actually a real thing. My Dr. gave me that diagnosis at 16, after going to him with Lyme for the 8th time. My mom figured out she was a celiac when I was 20 years old, so I then started on a gluten-free diet and felt good, but didnt realize that it was actually helping me. I went back on gluten to have the testing done, but it came back negative. So I said okay, I'm not allergic to gluten it must be my imagination or something else and went on my way. Had two more doctors tell me I probably wasnt Gluten intolerant. I then started to get serious urinary issues, and started to go to urologists. They couldnt find anything wrong, so I went to a GI and they told me nothing was wrong, after doing all the testing over the years, they said I wasnt allergic to Lactose or Gluten, however my most recent GI said I have a Geno-type for it. MFer*** I know its already here. It doesnt take but an hour and I am in gut wrenching pain and cant get off the toilet for sometimes hrs, with breaks in between (4 times on) and the pain and discomfort lasts for hrs. The doctor has put me on every kind of medicine and nothing works. He said well you dont have anything we test for, so I'm just going to say you have IBS. Which still makes sense, because there is times, I know I havent touched gluten ( I dont think, I'm not a very good label checker) or cheese and I'm still in the BR. I am currently on 50MG Amytriptaline (spelling) for the depression, urinary issue and intestinal inflammation(whether its there or not, the gastro put me on it, and it keeps the other two things at bay, so I cant go off it. However, it doesnt do too much for the stomach problem. The only solution I have found is Marijuana, which I have only recently started (1yr), but man does it make a difference. Now I can have a full time job, but I have to smoke to go to work. Which isnt my most favorite thing to do , but Ive gotten used to it and it helps me tremendously. So its become my catch all illness defeater. However, it only puts my intestines on hold(how long depending on how much pot, but usually a small amount keeps my stomach at bay for about 6-8 hrs. I can suffer the last hr at work, but at least I'm not in the bathroom for my whole shift. Which is great, its an amazing feeling to be at work without something plaguing you. I still dabble in gluten, like 1 slice of pizza, here and there (bc im supposed to be not gluten intolerant) but the devil strikes every time. Im sure Ive missed some stuff, but would like some feedback on the route I should take, get some insight, my wife said I should go to a holistic doctor, which has amazing reviews near us, but its 500 dollars cash to get the evalution and its not covered by insurance. She thinks I'm allergic to soy, which I guess is in both lactose and gluten?? But ive never been tested for that. I want some light to follow. Thanks

 

Is it typical to feel an attack so fast?

 It happens between 15 minutes to 2 hrs, giving the span, but usually an hour.

Does everyone react the same way to gluten? 

  - I dont get diarrhea or constipation, I get a little of both, its loosely packed and hard to pass with excruciating pain. Other times ( I think this is the IBS part), it'll just come out of no where, but its not super painful, but I cannot hold it at all. 

Could all of my problems be Gluten/Lactose...or just part of it/none of it?

Has anyone else gotten a negative test, but still said hell with it, Gluten Free?

Are there any good, well organized mega threads for stuff to not touch if you're allergic to gluten, especially lesser known things (to avoid oops moments)

 

 

 

 

 

 

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Angie123    0

Angie123
Posted

Hi... I'm so sorry you feel like this. It's just awful to not have answers, which doesn't help the stress and symptoms much at all. I have a son your age, so...I'm in my early 50s...but, can relate to how you feel because I went through the cycle of stomach issues for many years. Flare ups and just general pain in joints and fatigue...IBS symptoms...and Drs who couldn't establish anything specific.   I know it's pretty unusual to get a colonoscopy at your age, but, that's how Celiacs was diagnosed, finally...for me. I lived with Celiacs for many years, not knowing I had it. My gastro Dr said, "your body finally just says...no more. And can't compensate."  I realized, I had adjusted feeling bad all the time, as if normal. SO... go gluten free. Why not? And be really dedicated to it. There are SO MANY gluten free options out there now that are REALLY great.  Give it some time...at LEAST a few months...and see if you feel a real difference. I actually never had a problem with weight LOSS.  I was always bloated and held a lot of fluid before diagnosis. After, I lost 22 pounds without trying or depriving myself other than no second helpings...and NO gluten... just watching what I ate.  Just watch for things that you would NEVER think has gluten in it. look at ingredients on labels and know the words to look for that are red flags. In the meantime, you can't go wrong with whole food... and simple cooking for yourself. AND LOTS of water. ...Lots and LOTS of water :)  Food diaries help too in the beginning... and write down how you feel after eating. Helps pinpoint stuff! 

 

 

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Posterboy    81

Posterboy
Posted

The Toking Tick,

It might benefit you to read this thread they also have a Lyme issue.

Don't stop taking your antidepressant but be aware some of these issues you are having with you GI can be attributed to side effects of the amtriptyline you are taking.

see this drugs.com artlicle on its side effects.

https://www.drugs.com/sfx/amitriptyline-side-effects.html

alos some of the antibiotics used for Lyme treatments especially neomycin can also (see thread above) cause drug induced "celiac like sprue" villous atrophy.

I swear by Magnesium as Magnesium Citrate or Mangesium Glycinate for greatly improving my moods.

see this link about "Rapid recovery from major depression using magnesium treatment."

https://www.ncbi.nlm.nih.gov/pubmed/16542786/

here is a link about appropriate nutrient supplementation in some one who has developed celiac disease.

https://www.ncbi.nlm.nih.gov/pubmed/24195595

I have taken them all myself (except Iron) folic acid, b-12, vitamin D, zinc and Magnesium.  And the only one I still take is Magnesium Glycinate.

I hope this is helps.

***this is not medical advice but I have seen Magnesium and Vitamin D work wonders for my depression.

I also recommend a good b-complex. B's helps us with stress.

see this link about how supplementing with a B-Complex has been shown to help celiac's.

https://www.celiac.com/articles.html/celiac-disease-diagnosis-testing-amp-treatment/b-vitamins-beneficial-for-celiacs-on-gluten-free-diet-r1416/

again I hope this is helpful.

2 Tim 2:7 “Consider what I say; and the Lord give thee understanding in all things” this included.

Posterboy by the grace of God,

 

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