GF for 8 months after being sick for 18 years....
 

Hi, I was diagnosed in July and went immediately GF. I had first starting quitting jobs 17 years ago when I was 32 due to severe IBS, having taken off for months and years at a time during which I could barely walk out my door bc my IBS was so severe. About 5 years ago, I started noticing that my short term memory was getting very bad. I would repeat myself in conversations, and not remember what I was being told within the context of the same conversation.

I started struggling for words at points in time whereas, I had always previously been a word master. Then, about a year ago, my speech started getting slurred. I had instances like the news reporter had last week, wherein I would suddenly become incoherent or, sound like a robot with it's batteries running down. Another problem that I had had and caused me to have to stop working at times - aside fr my IBS - was that I could never rebound from any cold, flu or, virus. Even minor colds would put me down for a month or, two. I caught a stomach virus about 3 years ago. Everyone else was off work for 1-2 weeks, I was off work for over a year. And, that is what happened again in June. I caught a stomach virus, everyone else was off for a week. Mine turned into colitis and prompted my CD diagnosis, finally.

Instantly, my IBS went away as soon as I stopped eating gluten, but that gone, I nonetheless fell into an abyss. I had historically taken several vitamins a day. My doctor instructed me to go off all of them. I literally fell in bed and couldn't even take care of my daily needs for about 5 months until I finally realized my doctor was wrong and began taking my supplements again - the ones I had historically taken - and now, I've added more based upon what I've read is best in treating the pheripheral neuropathy and the brain fog I have had. At my worse, I couldn't even spell the word, word, about 3 months ago.

Now, after beginning all these supplements, I am making strides and seeing some recovery. I think I have beginning Trigeminal Neuralgia, also. One side of my face will swell. I have some shooting pains in my face, electrical headaches at points in time and my facial skin is exceedingly dry. It sloughs off when wet and nothing I put on it helps. It used to burn all the time and turn bright red. It has stopped doing that. I do light massage and focus on the pressure points in my face for this. I have also found Qigong to be helpful in stimulating energy flow in the back of my neck, which used to feel swollen and like I literally had a board attached to each side of my neck, but now, does not.

So, I am taking -

Pantothenic Acid 1000mg
Amino Complex with B-6
EPA 1000mg
Vitamin K1 50mg
P-5-P 50mg
Potassium 595mg
Ascorbic Acid 1000mg
Zinc 50mg
Magnesium 500mg
Calcium 2000mg
Vitamin E with Selenium 400iu
D-3 5000iu
Vitamin A 8000iu
Centrum Daily
Stresstabs
Bromelain 500mg
Papaya with additional enzymes

Looks like a lot, I know.

I know that I am still not absorbing fatty acids bc my doctor has told me I'm low and I can eat them all day and still be low. They are the one thing that upsets my stomach at this point in time and gives me my old IBS symptoms.

I do not have insurance so, I am trying to go all of this alone.

Does anyone have any advice for me. I am still very worried about my face - not just out of vanity, but bc it still hurts and stings and the appearance is getting very bad. (How many layers of skin can I lose?) It's beginning to take on a burnt appearance. And, I still often feel like I can't concentrate. Like I'm just closeted off into myself and like my verbal skills are still not what they should be.

I am currently sticking pretty much to a paleo-diet. All grains give me reactions and I recently found that corn, gives me 'glutened' reactions, too. I seem to have a bit of Multiple Chemical Sensitivity going on. Fibro that is most often triggered by breathing in gluten and other chemicals. I am off gluten, processed sugars, corn, soy and dairy, save hard cheese and Greek yogurt.

I would greatly appreciate any helpful hints.

Thank you.

Good to see you've gotten here--
 

--and I reiterate (as mentioned in the Introductory forum) you should be perusing The Gluten File, which is accessible at the top of this forum, in the "Stickies" section.

I'm amazed anyone would tell you to go off supplements; if you've had a leaky non-absorbing gut for this long you're likely low in large numbers of essential nutrients. The trick will be finding the balance.

And yes, gluten problems can present with neurological and other symptoms beyond the gastrointestinal tract. And most doctors are still not cognizant of that.

Thank you. I will look at that.

I was having so many reactions at the time (itching and small welts) that he said he felt the supplements I was taking could be part of it. I've always taken more supplements than most ppl and at the time, thought maybe he was right. Now, I realize they were probably what kept me going for so long. Live and learn. :o)

Thanks, again.

Itching and small welts?
 

Dermatitis Hepetiformis is a condition that is well known to be a symptom of celiac/gluten sensitivity:

http://en.wikipedia.org/wiki/Dermatitis_herpetiformis

http://sites.google.com/site/jccglut...sherpetiformis

Just a thought....

double check the type of magnesium you are using..

Oxide does not work. Chelates are better, and so is chloride in the form of SlowMag. Oxide is used now for laxative action only because it is not absorbed.

Yes, but I don't have a rash and the affected area is only on my face. My skin has been so dry that I haven't been able to wear make-up in 2-3 years. I've tried everything under the sun to soften it. It is scaly and as I say sloughs off when wet. Trigeminal Neuropathy is the only thing I can find that would cause this and when put together with my other symptoms of pain, burning, swelling and electrical headaches, makes sense. It has been associated with gluten intolerance, too. The thing that is odd in my case, as with so many of my more overt symptoms (including my pheripheral neuropathy), is that it got much worse after I went off gluten. I had already started to have some symptoms, but everything intensified immediately. Perhaps, this was caused by the fact that my gut was already damaged and then, when I got colitis, the damage was intensified? It is the only thing that makes sense to me.

Thanks for trying to help.

I would also add B12 to your diet. Those of us that are gluten intolerant often times are also B12 deficient. Have you had your B12 level checked...I would have the level checked first, then add B12.

A family friend was wasting away to nothing and always in so much pain. The doctors thought it was gallbladder. They thought it was so many things, but for so many years they never even questioned FOODS. She has a severe allergy/sensitivity to one food (not gluten). It is hard to avoid it completely, but harder to have the symptoms. When our families get together it is funny because she can't eat what we bring and we can't eat what she brings.

since most meds are bound with gluten,i think there will always be an issue of taking meds bound with 100% gluten, they are not labeled as they are not classed as an active ingredint,as all gluten suffers know,gluten is pretty actived

OP...corn is a grain....also one of the top 8 allergens. Now, check out ALL personal care products, and make sure they are gluten and corn free.
immediately post gluten stoppage, you may have been suffering withdrawl syndrome....good luck