9 replies to this topic

[zebaldwin]

Like everything else I've tried, I was praying so hard gluten was the answer, and so far, like everything else, it has done absolutely nothing. I have had chronic headaches and weakness and most recently brain fog (my scariest symptom)
I went gluten free on my own about 6 weeks ago after testing negative through the blood test.
The brain fog, headaches, and weakness in my arms and legs are the same.

I am in college, and this diet is a lot of added stress. Should I stop? Should I rule out gluten completely? I am assuming yes, but I am thinking of sticking with the diet for another week or 2.

I am seeing a new neurologist who also hasnt found anything except a D deficiency which I am taking a prescription for.

I feel so hopeless. Things like these that sound so promising just make life so much worse weeks down the road when they don't work (at this point, I just assume nothing will work)

Sorry for the depressing post. I'd appreciate an opinions or comments. Thanks!

[mushroom]

From what I have heard on here, the neurological symptoms of gluten intolerance take the longest to resolve. The common wisdom is to give the diet a strict trial for three months before you start concluding that it is not helping. I am sorry you are finding it so stressful, but I do think it is worth continuing the trial.

[iamsarar]

I Had gone through something similar. I was eating gluten free and not feeling better. I was going to give up but I decided I need to make sure I was doing things right. I found out that I had gluten in my lip gloss, shampoo, makeup and thinks like mouthwash had a cross contamination issue. I found other things that had a possible contamination. SO after getting rid of it ALL. Every thing! I bought a new toaster, cutting boards, mixing spoons and so on ( cheap stuff, I didn't spend a lot). I was for sure 100% gluten free inside and out, top to bottom and only then did I feel amazing and all the symptom went away and the fog lifted. I don't know it this would be the same for you but look at everything in your life that is by your mouth and make sure there is no gluten. Hope you feel better soon

[zebaldwin]

iamsurar,
how long were you on the gluten free diet with no change? And when you say NO change, was there literally nothing?
I just feel like if I am cutting 99% (even if I am missing something little) it should help SOME...
I have already checked toothpaste, mints, etc...I think I am cutting everything.

I was never the hypochondriac type, but now I am starting to freak out looking at all the negative tests and no answers...
I just can't help thinking cancer, or some crazy neurological disease.
Where does it stop? Do I go get catscans and everything else? (Ive had a brain MRI)
Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

[eatmeat4good]

I'm sorry you are still feeling badly. Have you thought of secondary food intolerances? There is a running thread on here about Soy being very bad for some people and causing neurological problems and depression. I think before you quit the diet, you should start to cut out other things like dairy, soy, corn, fructose, nightshades. Do something like the Paleo diet which limits you to just meat, veggies and a little fruit. Nuts too of course. It could be other food intolerances making you feel so badly. I know soy does it for me. I just now connected it with headaches. I have been gluten free for 6 months and am still finding intolerances...the more I eliminate the better I feel. Check out the other posts on soy and see what you think. I don't think these intolerances last forever...just until you are well healed, but you might not start feeling that wonderful feeling of getting well until you find out what all is making you sick.

I hung on to cream in my coffee for a long time and then found out it really was part of the problem. Then eggs, then soy. Just keep trying things. If you go back to gluten I fear you will lose more ground. Good luck but remember casein and soy can also cause neurological and intestinal problems.

[mushroom]

Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

I hope I don't sound patronizing when I say that the first challenge to our invincibility strikes pretty hard, especially at 21. We are suddenly not in control of our life any more and it is scary dealing with the unknown. But you've got to believe in something, and only six weeks in I think you should still believe that this will eventually help you, especially if you have eliminated any possible source of cross-contamination (and if you haven't you should double check right now). . I was struck with melanoma at 23, and it was like someone hit me over the head with a hammer and I was not seeing clearly at all. It dominated my thoughts and fears. But I was determined it would not strike me down and here I am, an old lady (well some would say that, I don't ) and I survived a second melanoma and lived long enough to find out I was gluten intolerant after all this time. And to find out that gluten can give you rheumatoid arthritis and psoriasis. And that this needn't dominate your life either, although I do spend quite a bit of time here trying to help others overcome this bugaboo.

Hang in there and have faith, whatever faith you believe in, and come back here six weeks from now and tell me you are no better and I will tell you to look elsewhere perhaps

[zebaldwin]

Thanks eatmeat4good and Mushroom...

I have tried eliminating other things. I didnt eat dairy or soy or gluten for a good chunk of the six weeks. But being in college my choices for food are severely cut enough with gluten, so I added gluten and soy back (after no results either way)

I mean, for them, will it also take up to 3 months? It seems like trial and error, 3 months at a time, could take a long long time, and if my problem isnt an intolerance, I dont want to keep losing time and doing harm.

Its hard, and I know you all are in the same boat so I shouldn't complain...it's just taking over my life, and since its physical its not like I can just get over it...

sighhhh

[mushroom]

Gluten, dairy and soy, all at once, for three months. That is the prescription no matter how hard it is. You do want to get better, right?? I added in lactose after two years in the diet, no problem. Probably could have done it sooner but I wanted to be sure. Never soy, and never gluten, ever. Nor nightshades nor corn, and at the moment no legumes or citrus. Maybe those will come back, maybe not.

Now, I know that college makes it harder and you want to hang with the guys and do regular guy things and not stand out as the oddball, I know all that stuff. But still I say, which is more important? Living a healthy life or "being one of the guys"? You have only one life to live. You can either make it a short, pain-filled one being one of the guys, or a long pain-free (perhaps?) life by not being afraid to do your own thing.

[eatmeat4good]

You are right...it is physical AND mental...and you cannot just get over it. I want you to know that I used to not "believe" in food allergies. I didn't. For years I thought all food was fine and those who didn't think so were just wrong and had something else they didn't know what it was. But the truth is...all that time...I was suffering with Celiac and other food intolerances. It took me until 47 to figure it out and to find out that you don't have to "believe" in something for it to be effecting you very badly.

I know it sounds like months of eliminating something is a long time. But if you don't eliminate it, it will still be effecting you badly and you will think you have something else. I spent my whole life that way. You don't have to. You can handle a few months of inconvenience and hassle eliminating the things that might be making you sick. I am just starting to really feel normal after 6 months of healing. It takes time...like up to 2 years. Hang in there. And really it is a good thing you are figuring this out at your age.

I think Mushroom is right. You should stick to it strictly for a few months more before throwing in the towel. You have nothing to lose. It may help you for the rest of your life if you puzzle it all out now. Best of luck, and you CAN do this.

To Mushroom...Wow! You have survived a lot! Thank you for all the writing and teaching and sharing and educating you do here for everyone. You are really a backbone for us who need to learn so much. Thank you for what you do.

[iamsarar]

iamsurar,
how long were you on the gluten free diet with no change? And when you say NO change, was there literally nothing?
I just feel like if I am cutting 99% (even if I am missing something little) it should help SOME...
I have already checked toothpaste, mints, etc...I think I am cutting everything.

I was never the hypochondriac type, but now I am starting to freak out looking at all the negative tests and no answers...
I just can't help thinking cancer, or some crazy neurological disease.
Where does it stop? Do I go get catscans and everything else? (Ive had a brain MRI)
Its such a vicious cycle, because if you're not stressed and anxious starting out, it makes you that way.

I'm a pretty "tough" 21 year old guy...and this is the first time in my life I am really scared.

No there was some change, I wasn't as tired and I still had brain fog but no headache. It was because I was feel a little better that made me look at everything....Also it was a couple of weeks before the fog lifted. All the best to you. I hope you figure it out. I am a believer that diet can change your health for the better....I also stopped eating beef, chicken and fish before the gluten free because of high blood pressure and cholesterol. I think eating vegetarian has greatly helped in my feel so much better.