Could Someone Read This No Help From Doctors Yet.

[Timoteiy]

I have been reading on this forum for months, and it has by far been the most helpfull in pointing me in the right direction. My sincere thanks to its founder.

I wish I could make a contribution, but because I am 'undiagnosed' I still have a lingering doubt in my mind.

First of all, I was born in 1959. At that time, as a baby, food was going straight through me, and I was becoming skinny and malnourished. My distraught mother took me to the doctor and the diagnosis was that I was a 'celiac' baby, to take me off wheat. After this, I got better.

(a little family background- families on both sides made their way ship, horse and bugggy from england to the wheat belt of Canada.)

Now, it was assumed that this could very well be a form of as of yet unformed 'villi' in the stomach or something that I would eventually outgrow. I was eventually re-introduced to wheat.

There is alot of family evidence of gluten intolerance. Last year, a niece that had to stay home and be home schooled for severe migranes was able to stop her migranes by quitting glutten, and hasn't had them since, after years of them!!!!

I had periods of confusion and difficulty learning, rashes, fogginess and depression all my life.

I have been given primarily anti-depressants.

Things got bad, REALLY bad, when I made a complete carreer change a few years ago to a job with random and often long hours, much less exercise squedule. I was under a lot of stress from my wife to renovate, under a rigourous and stressffull training squedule, financial problems. I started getting such intense brain fogginess and depression, extreme irritability in the legs especially when tired, bad bad memory and concentraion, lots of rashes.

The medical response was primarily to the depression and their answer was anti-depressants. I have been off and on them for 20 years and have mentioned (actually at the prompting of my dear old mother!) about the Celiac incident as a kid, without any response from Doctors.

I lost my marriage, and actually kind of went nuts for a while, couldn't concentrate to have much of a conversation so I pretty much stayed alone, paronoid. I was looking after my son and working all last year and things probably would have got worse, except for one light at the tunnel: After allmost a month of being fed tasty bread I got sicker, primarily with diahrea, insomnia etc. A light went on, and I found some information on the 'net (HERE!). I cut gluten right away, although I had to learn alot. A few weeks later I insisted a doctor at least give me a blood test, for the anti-bodies. It came up negative, and the doctor said that the fact that I was off Gluten wouldn't effect the results.

I still clung to the Gluten free Diet, trying to learn more and more. This spring I had a wonderfull period where all my symptoms started to abate, I was off anti-depressants, I had no tingling in the legs, no insomnia. I was taking alot of supplements, so much that I don't really know which ones were helping and which weren't! Life just got better. Not great, but better, and I felt no nneed to take anti-depressants.

Lately, I started a 'Total Body Cleans" detox type program complete with bowel cleanse, which, I think somehow that is what brought all the symptoms back again, even though I am still being carefull to stay away from gluten. I can't work in this state of confusion, and again, all that medicine has offered is anti-depressants.

I have insisted that I go to see a Gastro-entologist, and have to wait til September. Meanwhile, I am acting on the assumption that I kind of screwed up progress by doing that Cleansing Program, and I will try to help my intesines heal again with Glutamine, pre and probiotics primarily from natural sources, and keep going. I have alot of diarhea again, insomnia is back abit, and brain fog and restless legs has returned somewhat.

I have made some serious headway, although recently I have experienced a set- back. But if I relied on doctors' analysis, I would still be as crasy as I was last year. I know it takes time to heal, but I don't allways know whether I am helping of hindering the process. I have no choice but to act on assumptions, trial and error. THANK GOD THIS SITE IS HERE.

HERE ARE THE QUESTIONs I sometimes doubt my own thinking. I want to get a proper diagnosis. If I go to the gut doctor, and it is determined that I get a biopsy preformed, do I have to go back on Glutten for a few weeks? IF so, I have to take the time off work. I do not want to go through that stress again.

Is it possible the blood tests didn't show unusual antibodies because I had allready been glutten free for a few weeks?

Has anyone had the negative experience with the bowel cleanses?

What symptoms, besides diarhea, might be helped eventually by trying to help the healthy intesinal bacteria along, and how might I go about this best? Oral Probiotics and pre-biotics? Diet suggestions? I am talking the whole range of sympomes- diarhea, nerve problems.

[KristaleeJane]

do I have to go back on Glutten for a few weeks? IF so, I have to take the time off work. I do not want to go through that stress again

ANSWER:

Yes if you wanted to get a proper diagnosis then you need to be eating gluten, some people say for weeks, but it really could be longer to get an accurated result. This question has a lot of differnt answers, it depends on how long you have been gluten free, How long the damage has been accuring before going gluten free. If you are completly healed now then it could take longer then a few weeks for the damage to occur and for you villa to be destroyed again.

Most people say that if the diet is working then why do you need a diagosis, it sounds like to me this has been going on since you were a baby, and it is not something that goes away, you have it for life.

If you are still having symptoms then more than likely you are getting traces of gluten somewhere in your diet, could be through cross contaminatin, sharing toasters, butter dishes, or possbily from eating out. Depending on how strict you are being on the diet.

Also Diary could be a problem for you to, it is with a lot of celiacs. Try eliminating dairy and see if that helps, normally if your symptoms are returning though, all it means is that you are getting glutened accidently.

Is it possible the blood tests didn't show unusual antibodies because I had allready been glutten free for a few weeks?

ANSWER:

If you were only gluten free for a few weeks it could of affected your levels some, but it still should have showed some sign there of some antibodies. Again it really depends on how long you were on the diet, how strict you were being on, normally it would take at least 3 mths of gluten free diet (strict) for blood levels to return to normal

ANSWER:

Has anyone had the negative experience with the bowel cleanses?

ANSWER

Check the ingredients in the bowel cleanse, call the company and make sure that it is gluten free.

What symptoms, besides diarhea, might be helped eventually by trying to help the healthy intesinal bacteria along, and how might I go about this best?

ANSWER

You should avoid dairy for the first 6mths to a year until you are healed inside, you may want to have a lactose intolerant test done.

Just eat very plain, healthy foods for the first 6 mths, no fried foods, nothing that is hard to digest.

If you are ok with dairy, the best thing for your stomach is probiotics.(found is most yogurts)

Good Luck

Krista

[lizard00]

Hi and Welcome!

It sounds to me you got your diagnosis as a baby, and is commonly and mistakenly believed, even today, you were thought to have outgrown it. But this is never the case, you cannot outgrow Celiac.

Personally, I am not up for a challenge. I had headaches daily and got sick after almost everything I ate at my worst. When I got rid of the gluten and immediately started to feel better, that was pretty much enough for me. I did, however, have to prove it to myself once or twice, which involved eating a lot of gluten and then being sick for a few days.

My GI wanted me to do a month challenge then follow up with an EGD. I wouldn't do it; the dx was important to him, not me. I had my proof and was good to go. So, we settled on a genetic test, which revealed that I had two copies of the DQ2 gene that 95% of Celiacs have. Which puts me at an extremely high risk, so he said that the genetic results, paired with my dietary response was enough.

All of my Celiac Panel tests were negative. But this is because I am IgA deficient so basically all the tests were skewed and there really was no chance that those tests could have shown that I have Celiac. I had two doctors, and MANY friends/acquaintances tell me that I was stressed, busy, etc... push for what you know. If your doctor doesn't listen, then find another one who will. My relationship with my doctors is this: It's my body, they cannot possibly know it better than me. But they have the book knowledge that I don't have to piece things together. So it's a partnership. You can get much more accomplished that way.

[gfpaperdoll]

You got a diagnosis as an infant, you do not need another one. You do not outgrow celiac, like they used to think. Well of course there are still some uninformed doctors that think that.

IMO, if I were you I would in no way consider trying to kill myself to get some celiac/gluten test, that is probably going to be negative anyway & what are you going to do then, start eating gluten? no, you already know it is poison for you... & what would you do if it is positive? well, same thing, do not eat gluten. I think this could be turned into a nice algebra equation...

IF you want to test just use Enterolab.com & get the gene test.

You do not have to be eating gluten to get a correct test thru them.

In the meantime, eliminate all dairy & soy. & eat just plain foods - forget the Gluten free breads & stuff, just eat plain meat, seafood, veggies, fruit, & nuts, well & maybe some rice & some cornmeal or corn tortillas.

But, go back to just a few foods until you get the diarrhea cleared up. I used to have a "safe" food list that I ate when I got sick. that was before I knew about gluten, but thought I just had food allergies. My safe list was applesauce, rice, tuna, baked chicken, baked sweet potato, & green beans. Yours might be different...

You are probably related to my family , we were all born sick... We are double DQ1 & get the neurological stuff.

Note, I did not say to double check all your foods to make sure they are gluten free, because you should not be eating any manufactured canned anything at this time. But you should check your shampoo & toothpaste & personal care products. & don't be going around kissing any girls that have been eating wheaty stuff.

[Timoteiy]

Wow Thanks for the prompt replies YOu all are so helpfull!

You people are just great. I wish I could give some helpfull hints too. I don't want to mislead anybody though. The verdict is still out on what is helping and what is not. When I get something definitive, I'll be sure to pass it on. Who knows, it may help someone else. It sure helped my niece.

I have to get a proper diagnosis for work, because I am in a safety critical job. Not my choice, but necessary for employment.

I am concerned about the anti-body test, but I have no idea whether it was done properly. All I know is that I was a few weeks off glutten and trying to learn more when I had it done. Mabe I am IG A deficient too? Who knows.

I would love to get the Enterolab test done. Mabe the Gastro will know more.

I am eating just plain foods- meat and veggies, etc. I also want to get a Naturo to check for other intolerances and allergies, as per advise .

As for the Bowel Cleanse-- I think I cleaned out too much of the good bacteria. I quit a few days ago and I am still suffering from diarhea. I didn't see any gluten in the capsules, although, who knows? I found out that alot of those bowel cleanses are just a scam anyways. In my case, it seems to have made me feel worse at the end of it.

I'm looking into a good pre and probiotic supplement that would help celiacs. There is so much nonsense out there. Its another area that I can't tell the truth from the hype. The business of healing absorbs alot of my energy.

The other problem is that I drive alot of grain trains, mostly wheat, that leak grain and you can smell them. Mabe that is a source of gluten and I have to quit my job! I know now that if I do get abit of gluten I know it, wheras when I was ignorantly ingesting it daily I couldn't tell what was causing my symptoms. As for kissing wheaty girls, well, I wish.....

[gfpaperdoll]

oh my, driving those grain trains - well yep, you might be getting enough to even test positive on the tests although you are not eating gluten.

I know you probably won't do it, but you should wear or at least keep a mask handy for when the wheat spill is really bad. What happens is that you breathe that stuff in your nose & your mouth & throat & it can be deadly.

I would also get one of those little things that you wash out your sinues with, I think they call it a neti pot, or something like that. You can get one at Walgreens. & if you think you are breathing in a lot of wheat dust, take a big swig of water & rinse out your mouth & throat & spit it out. Not that I think that it will do much good, but at least you will have a fighting chance.

Make sure that you also get an x-ray of your lungs. You could be one of those people that pop up with lung cancer. & lets hope that you are not a smoker.

start taking a sublingual B12. & or get a B12 shot when you go to the doc. Just trust us on this one, you will need the B12. would not hurt to also take vitamin D.

keep us posted...