How Many Suffered From The Fatigue/brain Fog, Etc. For 20 Years Or More Before Diagnosis

[Chap]

I was reading some stats about the average length of time that it takes for the docs to sometimes figure out the correct diagnosis for Celiac Disease. I was wondering how long it took for those who had it for 20 years or more (particularly the fatigue/brain fog) to begin to feel a bit of relief after going gluten-free? And, are there other things that can be done to assist in recovery, such as intravenous vitamin/mineral injections, antioxidants, etc.?

[nederlandse]

This is a really good question. I wish I had an answer but I wanted to post that I am very interested in this topic.

I was reading some stats about the average length of time that it takes for the docs to sometimes figure out the correct diagnosis for Celiac Disease. I was wondering how long it took for those who had it for 20 years or more (particularly the fatigue/brain fog) to begin to feel a bit of relief after going gluten-free? And, are there other things that can be done to assist in recovery, such as intravenous vitamin/mineral injections, antioxidants, etc.?

[zip2play]

I can tell you the GI troubles for me didn't start till about 2003. But I can remember, when making sugar cookies with the kids at Christmas towards the end, feeling dizzy and light headed (whether I ate any or not). I used to always blame it on the sugar, being too near it bothered me. Well, now I know that it was, foggy feeling due to the flour I was inhaling. I mean, sugar cookies are the worst. Constantly adding more flour and such! My fatigue and dizziness, I never attributed to my GI problems, tell I discovered Celiac!

Monica

[elonwy]

I just thought I was stupid and lazy. gotta love that logic huh?

Elonwy

[nederlandse]

Sadly, thats how I felt too. Or, I figured I was just getting old (at 22, 23, 24) and loosing energy. I've been gluten free for a few months now but my energy is only back to normal on ocasion. Could this be due to trace ammounts of gluten? Does anyone get foggy-sleepy symptoms from cooking / eating from pans and dishes that are also regularly used for non-gluten-free meals? Until I read a post today about trace amounts, I figured I just hadn't finished healing yet (which is probably also true).

Thoughts?

I just thought I was stupid and lazy. gotta love that logic huh?

Elonwy

[fritzicurls]

I started having seizures 17 years ago. Then came the fatigue. I finally figured out celiac disease 10 months ago. By the time I went gluten free I had the following symptoms: seizures, constipation, fatigue, pale, pale face, depression (terrible), horrible anxiety, bloating, yeast infection, high blood pressure, bone spurring, arthritis, uterine and ovarian cysts, and breast cysts. Four days after going gluten free the anxiety shut off like a faucet and never returned. It took about 2 months or so before the depression lifted, but it slowly did and has never returned. My blood pressure dropped 25 points top and bottom (I had done everything to bring it down - no one could figure out why I had HBP because I am thin, run, and meditate). At about three months I had clients asking me if I was tanning - nope just gluten free - because the color returned to my face. The fatigue left at 2-4 months and has not returned. The yeast infection and constipation took more than just gluten-free diet - but with the help of ThreeLac, magnesium, molybdenum, Candex, and Konsyl I have a good one every day, so to speak and the yeast infection (very restisant strain) is getting under control. As that goes away my arthritis pain is so much better!!! How did I cope? Some days not well. Running and meditation helped a great deal, though many days I felt like I was running with buckets of cement on my feet. (My dad was a great inspiration - weeks before his death due to bone cancer he was still making laps around the dining room table with his walker to exercise and keep his strength up in case they found a cure. He had a piece of paper on the table and he would hash mark his laps so he could chart his progress. If he could do that, I could keep running, no matter what.) Having a supportive spouse was helpful, as well as supportive sister who were also working out their own celiac possiblities. The medical profession was not helpful. I went EVERYWHERE in the country to really big name medical clinics trying to find a help for my seizures and NOT ONE person mentioned the connection between celiac and epilepsy. I found celiac disease in a book I was reading and could identify with every published symptom. I have not had a seizure in 13 and 1/2 months - this is not unusual for me so I still don't know if gluten-free will help with that, but I am keeping my fingers crossed. I am 54 and feel the best of my whole adult life. YAHHHHOOOOOO! So hang in there, keep putting on foot in front of the other, be fearless in talking to medical professionals, and educate yourself!!!

fritzicurls

[eleep]

Honestly, I've been kind of a career graduate student while I've been struggling with this stuff -- lucky to have found consistent sources of funding through research/teaching assistantships and the occasional student loan to get me by. A few years ago, a therapist suggested that ADD was the problem, and I did take Adderall for a while -- which helped somewhat, but I was really not comfortable with that diagnosis or the fact that there were so many things left unresolved by the drug treatment. I got really focused on making my health a secondary research project at that point. I'm finally making enormous progress at an unimagined rate -- partly because I'd procrastinated on my degree all those years by learning to cook, eat right and take better care of myself -- the celiac connection was just the final health-related thing that fell into place.

I'm grateful that I'm going to come out of this with an advanced degree and, yes, a bunch of student loan debt, but it's manageable at a decent fixed interest rate. Somehow, I've maintained credibility among my colleagues and committee members, so I'm actually in good shape to find a job. I've also got a great boyfriend whose support and company are of inestimable worth.

Whoops -- I didn't really catch your question about supplements, etc....

I found that the brain issues and fatigue improved considerably with a combination of regular exercise and diet -- I've been eating mostly simple, whole foods for about five years. I also supplement with the usual vitamins and fish oil capsules -- which I think have helped a _whole lot_. And I took up a 20 minute/day meditation practice -- which was the only thing that kept me from completely losing it during the worst episodes of fatigue and fogginess.

[ianm]

36 years of brain fog and I almost didn't survive it. I barely made it through school, got put into special ed, etc. To keep it at bay I am fanatical about the diet and exercise a lot and get plenty of rest. Any gluten free vitamin seems to work for me. I also take New Vision liquid minerals, about an ounce every three days.