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jacey

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jacey Newbie
jacey
Posted

Hi I'm Jacey and I have been extremely ill for 2 years and that doesn't even touch the 8 years prior to that - but the last 6 months I have been ill beyond function but have completely normal blood tests, so no one will believe me when I say I am so very ill!!!- Almost all food except very plain food makes me ill- and this explains why many symptons pretty much go away when I go low-carb-

and then I stumbled upon this place last night- and OMG I know I have celiac I have absolutely every symptom here from profuse sweating to abdominal swelling ---I'm arranging for tests next week, and i'm in the middle of another round of testing for autoimmune diseases (the last round were all negative) and I have been to somewhere around 15-20 doctors who thought I needed an antidepressant!

I am just beginning to check the site out, but if someone could answer a couple quick questions please- is fibromyalgia typically associated with this? or vice versa? and what about bone and joint swelling? and last, Raynauds? that's actually how I found this page was there was an article that said Raynauds can sometimes be an indicator of Celiac?

thanks so much for any help!

jacey

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Rusla Enthusiast
Rusla
Posted

Welcome to the board Jacey. There seems to be a correlation between these things and celiac disease. The symptoms of fibromyalgia are very much like Celiac diseasebut considering many of us have these problems also I would say the possibilities are very good.

I figure the reason they haven't matched many of these things up with Celiac disease is the same reason many of us go undiagnosed for so long. Doctors are reluctant to diagnose something that they can't feed you drugs for and some don't believe these conditions exist.

DingoGirl Enthusiast
DingoGirl
Posted

Hi Jacey,

I don't know about the connection to Celiac and Reynauds, but many on here have the pain you mentioned. Gluten and Celiac seem to be connected to SO many ills, adn if you feel significantly better on a low-carb diet, I suspect that you may be Celic. welcome to the board.

Remember that if you are tested, you should still be consuming gluten regularly (unfortunately) to get the most accurate read.

You will find SO much information here - these are the people who live with it. Let us know how we can help. :)

Jprock Newbie
Jprock
Posted
Hi I'm Jacey and I have been extremely ill for 2 years and that doesn't even touch the 8 years prior to that - but the last 6 months I have been ill beyond function but have completely normal blood tests, so no one will believe me when I say I am so very ill!!!- Almost all food except very plain food makes me ill- and this explains why many symptons pretty much go away when I go low-carb-

and then I stumbled upon this place last night- and OMG I know I have celiac I have absolutely every symptom here from profuse sweating to abdominal swelling ---I'm arranging for tests next week, and i'm in the middle of another round of testing for autoimmune diseases (the last round were all negative) and I have been to somewhere around 15-20 doctors who thought I needed an antidepressant!

I am just beginning to check the site out, but if someone could answer a couple quick questions please- is fibromyalgia typically associated with this? or vice versa? and what about bone and joint swelling? and last, Raynauds? that's actually how I found this page was there was an article that said Raynauds can sometimes be an indicator of Celiac?

thanks so much for any help!

jacey

Hi Jacey - I know exactly where you're at because I was there 5 months ago when I first heard the word celiac - same symptoms as yours, same doctor's reactions. Rusla's right - they just want to keep throwing meds at you. There was a story on celiac in the local paper that led me to do more research. The first thing I did was read Dr. Green's book "Celiac Disease" - it's loaded with great information that's not too technical. For me, the book provided a good basic knowledge that helped me maneuver through not only the maze of information out there, but also medical appointments. I've since expanded my library immensely, including quite a few good cook books. Good Luck.

Electra Enthusiast
Electra
Posted

Welcome I came upon this site while looking up my intestinal disorder that I'm now convinced I was misdiagnosed with. I have since tested positive for Celiac with the blood test, but I had pain everywhere in my aching body before I found out and was almost completely confined to my chair or bed. I've only been gluten free for about 3 weeks and I'm finally starting to feel like ME again YAH!! I've been very sick for over 3 yrs, but I have had symptoms for much longer then that.

Good Luck in your testing and I'm so glad you found us!!

LyndaCanada Rookie
LyndaCanada
Posted

Welcome Jacey

I've only been on this board for a day and I've already found it to be extremely helpful.

I am very newly diagonosed with Celiac. I also have Fibromyalgia so it is interesting that there could be a connection somehow.

Lynda

Viola 1 Rookie
Viola 1
Posted

Welcome both Jacey and Lynda. It's great that you found this board. You'll find us pleasant, hopefully helpful and sometimes sassy :P

Yes, do remember that you have to be eating gluten for the tests to be accurate.

Good luck with those and keep us up to date.

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jacey Newbie
jacey
Posted
  • Author

thanks everybody!

and I was looking at some of your signatures and the list of issues and they read like mine with multiple food allergies, (wheat, yeast, dairy etc) and multiple other allergies, no tolerance for sugar (Candida dx/ and mercury toxicity) and can't have most sweeteners of any kind (I seem to do ok with stevia and erythitol) and I have osteopenia, have had previous dx of chronic fatigue, and fibromyalgia (which is now very severe), can't tolerate chemicals, etc and on it goes --actually I am not sure what I am going to eat. Even bean flours make me ill, too high carb with the candida. And I really hate to eat now, everything makes me sick, and so I skip meals because I feel so much better if I just don't eat but then, when I can't take it any longer, I grab the first thing in sight, which usually has gluten in it :(

Again, thank you for the welcome and I'd better get reading now- ;)

oh one last question, and I am guessing this may go to Leaky Gut Syndrome, but has anyone had issues as well with bacterial infections or extremely high bacterial imbalances in stool test results?

thanks again for the help!

tiredofdoctors Enthusiast
tiredofdoctors
Posted

Hi Jacey -- welcome!! All of the conditions you have mentioned have been associated with Celiac. Raynaud's Phenomenon is associated with a whole HOST of autoimmune diseases (I also have this -- hurts like the dickens when your fingers and toes warm up, doesn't it?).

With regard to the Candida and Mercury toxicity -- the Mercury bothers me -- have you been to the Dentist and had your fillings checked? Have they "detoxed" you? Those are two very important things . . . . . .

With regard to the Candida -- de-yeasting is a bummer, but can be done. It requires that you have NO sugar (even fruits) for so many days, etc. The book "The Yeast Connection" gives better advice about de-yeasting, but also recommends -- oh shoot -- I can't remember the name of the drug -- you give it to kids for thrush (swish and swallow stuff) -- anyway, you DON'T have to take that. The amount that they recommend is also VERY high -- and most doctors won't risk it to give it to you. You DO have to take a pro-biotic. And lots of it. I even had to use a probiotic solution as nasal spray / drops / wash to get rid of the pseudomonas that I had in my sinuses.

With regard to the leaky gut syndrome, there is an enzyme called Biozyme that is GREAT for leaky gut. I recommend it highly.

I was lucky enough to find a registered pharmacist who also went to some college to get his degree in natural "remedies" as well. I would suggest that you try to find someone in your area who is like that, as well. I am really reluctant to rely on the kids at the health food stores -- someone who is 17, has quit high school and works there because it's easy doesn't necessarily qualify as an "expert" -- sorry if I've offended someone.

I also recommend "Freeda" vitamins . . . they're gluten-free, sugar-free . . . basically everything-free. Eskimo-3 Fish Oil is gluten-free, and I can get you the name of my probiotics, but my little poodle (teacup) is sleeping on my lap right now, and I don't want to wake her up!! (She kind of old, and she needs to rest a lot).

Again, welcome to the board, and good luck to you. Hugs, Lynne

Rusla Enthusiast
Rusla
Posted

My sister has Raynaud's has not tested positive for Celiac but then they did the test wrong. She also has many of the same issues I have including the dairy issues. I figure if they did things right they would find it. It was the DH that told the whole story for me as they did not want to look further than the ends of their noses and would not do the other biopsies and did the blood test wrong.

Budew Rookie
Budew
Posted

Welcome both Jacey and Lynda.

This board is great. I have been posting about a year and alays find it helpful.

I agree with all that's been said. Good luck! Budew

Viola 1 Rookie
Viola 1
Posted
My sister has Raynaud's has not tested positive for Celiac but then they did the test wrong. She also has many of the same issues I have including the dairy issues. I figure if they did things right they would find it. It was the DH that told the whole story for me as they did not want to look further than the ends of their noses and would not do the other biopsies and did the blood test wrong.

Hi Rusla, was your sister tested in Calgary? I talked my youngest daughter into getting tested there, her doctor sent her to a specialist who flattly told her that she didn't have Celiac and this test was a waste of his time, and he wouldn't do the blood pannel at all, but just went straight to the biopsy. In my mind if he already told her that she didn't have Celiac, he would make darn sure he didn't find any in the biopsy ... (of course he wouldn't want to be proven wrong,) which of course he didn't. :o You just have to shake your head at some of these so called specialists.

jacey Newbie
jacey
Posted
  • Author

everyone thanks again for your help- and to "tiredofdoctors" thanks for your help on the mercury - I am on top of the mercury issue - currently taking "Merc-out" and seeing a specialist and I have candida (glabrata which is more stubborn, not albicans) which they said I won't get rid of until i get rid of all the mercury and toxic bridgework in my mouth--so thanks for that and I am on a great enzyme Vitalzym which has serratia peptidase in it (and fyi -there's some Stanford U testing on celiac and enzymes)

I have a question though- I was sooooooo sick I took the gluten out of my diet for the last two days (and I feel 60% better already) but I finally got a lab order for the screening and I know I need to eat gluten for an accurate test, so does anyone know for how long I need to be eating it again? is two days enough for it to show up in my screening test? because after all this I sure don't want to get a false negative, it's just that I was sooooooo desperate for some relief!!!

thanks for the help if anyone knows!!

P.S. also, I found a great new book titled Celiac Disease: A Hidden Epidemic and it's written by Dr. Peter Green, the Director of the Celiac Disease Center @ Columbia University.

Jestgar Rising Star
Jestgar
Posted

jacey, how soon is your test? If it's only a couple days away you should be fine.

dlp252 Apprentice
dlp252
Posted

Hi and welcome Jacey (and Lynda too!)! Yes, as Jestgar mentioned if it is within a few days you should be okay...

jacey Newbie
jacey
Posted
  • Author

well I can pick up the lab order anytime --so if I have gluten for dinner tonight and eat gluten during the day tomorrow, then I could have blood drawn on Thurday morning and that should be ok, don't you think so?

thanks!

omg, I cringe thinking about the fact I'll have to feel like that all day tomorrow- UGH!

dlp252 Apprentice
dlp252
Posted
well I can pick up the lab order anytime --so if I have gluten for dinner tonight and eat gluten during the day tomorrow, then I could have blood drawn on Thurday morning and that should be ok, don't you think so?

thanks!

omg, I cringe thinking about the fact I'll have to feel like that all day tomorrow- UGH!

I would think that would be fine...well, except for the feeling bad part! :(

Jestgar Rising Star
Jestgar
Posted

At least it's only two days, not two months.

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