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sagemoon

Just Want To Share

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:huh: Hello!

May I share my story? Just turned 50. (Freaky)

2000 - 2005 Suffered from arthritis, loss of mental focus and memory glitches, headaches, and fatigue for many years. Gassy, gassy girl. Could out belch any challengers. Started barfing to the point of dry heaves once a month or so after heavy carb eating. Loved, loved, loved pasta, bread, flour tortillas. Was told to just stop eating whatever made me sick. Told I could not possibly have Celiac disease since those cases were always determined in infancy with a failure to thrive. And I was not slim, not heavy either, but always on the lookout to lose a few pounds. So it was an impossibility.

2004 - After an all night viewing of the bathroom floor tiles in a hotel in Reno, heaving my guts out yet again (note to self: those high dollar hotels really aren't any cleaner than the cheaper ones), decided to stop eating all carbs. Did Atkins for 2 weeks, felt like a million bucks, and no belching. Slowly added rice, still good, then as soon as I added a piece of bread, I belched within 30 minutes. Repeated this experiment a few more times, started feeling better overall, decided I must be over the worst, ate some pasta, OK, so maybe I can live with a few belches....just have to eat less of my favorite food.

2005 - Developed debilitating arthritis in both wrists, tested negative for RA. Exhausted. Absolutely exhausted. Cannot hold a paint brush, terribly depressed. Doc wants to give me meds for depression. They scare me, no thanks. Dry heaves are back, really scary when I can barely get them to stop after hours and then can barely move for days afterwards, my ribs are bruised. Read arthritis books that said to check your diet first. Decide wheat has to go.

Wheat free since December 2005

2006 - Went back to my doc in February, refused to leave office until given an antibody test. It was borderline. But of course, I had been wheat free since December. Doc said "See, I told you so." I paid for my own DNA test, it came back positive. Hmmm Doc turned white and admitted she knew nothing about Celiac.

DNA positive for Celiac January 2006

Antibody test borderline January 2006

Read anything and everything about Celiac. Too scary to eat gluten if I do have Celiac, the resulting diseases can be frightening. And since it is only a diet change and not a drug, I must do it, pasta be gone! Learning to cook and bake again, pretty fun. Don't trust anyone that serves you food! My Mom fed me gluten twice ("Oh poo, such a little bit can't possibly make a difference") and a sushi restaurant got me with the tea - it was green tea with roasted barley. Yowza! You can never be too careful. Good news on the soysauce front, though, San-J is coming out with picnic packs of their Organic Wheat-Free Tamari Soy Sauce. Look for it. I wrote to them and they sent me some samples.

Spring 2006 - Suffered from Small Intestinal Bacterial Overgrowth (SIBO) - with diarrhea and belching, vomiting after a few months of blissful health. What - was I totally wrong, do I have something else? What is going on? Doc no help. "Just quit eating whatever makes you sick." Found out via the Internet that it is a common complaint for Celiacs that have gone gluten-free. Conquered it with a diet similar to Atkins but with fruits and veggies, just no simple carbs. Plus a course of antibiotics. Took a while, but it finally adjusted itself.

And - no more arthritis!!! Woo Haa!!! I am painting again, what a relief!

June 2006 - Small Intestine biopsy - doc said it was 'boring'. Well, what do you expect? I have been gluten free for 6 months now. And I am not going to do a gluten challenge. What, you sadist, are you intensely crazy?!? You surely must think that I am! Think again!! I only did it to make sure something else hadn't started as a result, like cancer. So I am proud to be boring.

2006 - Biopsy Negative

Fall 2006 - Hey, haven't barfed since April!! Applause, applause. Found some great foods. I highly recommend Chebe bread products. They are the closest thing to a bagel yet and don't fall apart the next day like all of the rice based breads do. They are tapioca based (they call it Manioc) Here's a tip - I add a tablespoon of yeast and a tablespoon of FiberSure to the basic mix. There isn't any sugar in the mix so the yeast doesn't rise, but you get the flavor, which makes all the difference in the world. And we can all use more fiber, can't we?

And BEER is here! Wasn't much of a beer drinker until I was told I couldn't have any and it became mowing season. Bard's Beer Dragon's Gold is out now. They are selling in the Eastern US now and over the internet, should be in some stores in the Western half of the US by the end of this year. I bought some on the internet. Costs a pretty penny, to be sure. It is a sorghum beer, and it is excellent. Like a dark amber. Very, very yummy. I have one when I really am craving it. My best friend was allowed a small taste, all others can get their own.....

Only bad news, I've gained 15 pounds since I went gluten free. My doc says that is normal for a Celiac to do so since they are absorbing more in the intestine. Rats. But, it is the most pleasant 15 pounds I have ever experienced. I think I'll keep them. (I am using reverse psychology)

And guess what, my doc was right after all. I've quit eating that which makes me sick.

Would love to trade recipes and ideas with others. Thanks for listening :)


Anne near Seattle

Artist in Oil - Portraits, landscapes, abstracts

Wheat free December 2005

Diagnosed Celiac January 2006 by genetic testing and gluten-free trial

Gluten free January 2006

Egg IgG allergy diagnosed October 2006

Casein Intolerant October 2006 - Enterolab

Genetic testing revealed one Celiac gene, one gluten sensitivity gene

Healing after going gluten-free:

Severe arthritis in both wrists disappeared

Mysterious fatigue lessened, then energy reappeared

Low-grade depression lifted

Periodic vomiting followed by dry heaves finally abated after finding hidden gluten sources

10 months after Gluten-free

Short term memory greatly improved, can have 'normal' conversations

Symptoms of Adult ADD gone. Just the artist weirdness left, but I put that to use!

Husband diagnosed Gluten, Casein, Soy intolerant October 2006

Genetic testing revealed two Gluten Sensitivity genes, not Celiac

Thinks he is very lucky to be married to a Celiac. I agree.

"If you can't be a good example, be a horrible warning." - Catherine Aird

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Hi Anne, and welcome to this board! This is the most fun account of a horrible health journey I've ever read. I haven't laughed so hard in a while. All the time feeling for what you've gone through, of course. You're an inspiration with your positive outlook. Too bad you don't live near me, I would love to meet you in person.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

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:huh: Hello!

May I share my story? Just turned 50. (Freaky)

2000 - 2005 Suffered from arthritis, loss of mental focus and memory glitches, headaches, and fatigue for many years. Gassy, gassy girl. Could out belch any challengers. Started barfing to the point of dry heaves once a month or so after heavy carb eating. Loved, loved, loved pasta, bread, flour tortillas. Was told to just stop eating whatever made me sick. Told I could not possibly have Celiac disease since those cases were always determined in infancy with a failure to thrive. And I was not slim, not heavy either, but always on the lookout to lose a few pounds. So it was an impossibility.

2004 - After an all night viewing of the bathroom floor tiles in a hotel in Reno, heaving my guts out yet again (note to self: those high dollar hotels really aren't any cleaner than the cheaper ones), decided to stop eating all carbs. Did Atkins for 2 weeks, felt like a million bucks, and no belching. Slowly added rice, still good, then as soon as I added a piece of bread, I belched within 30 minutes. Repeated this experiment a few more times, started feeling better overall, decided I must be over the worst, ate some pasta, OK, so maybe I can live with a few belches....just have to eat less of my favorite food.

2005 - Developed debilitating arthritis in both wrists, tested negative for RA. Exhausted. Absolutely exhausted. Cannot hold a paint brush, terribly depressed. Doc wants to give me meds for depression. They scare me, no thanks. Dry heaves are back, really scary when I can barely get them to stop after hours and then can barely move for days afterwards, my ribs are bruised. Read arthritis books that said to check your diet first. Decide wheat has to go.

Wheat free since December 2005

2006 - Went back to my doc in February, refused to leave office until given an antibody test. It was borderline. But of course, I had been wheat free since December. Doc said "See, I told you so." I paid for my own DNA test, it came back positive. Hmmm Doc turned white and admitted she knew nothing about Celiac.

DNA positive for Celiac January 2006

Antibody test borderline January 2006

Read anything and everything about Celiac. Too scary to eat gluten if I do have Celiac, the resulting diseases can be frightening. And since it is only a diet change and not a drug, I must do it, pasta be gone! Learning to cook and bake again, pretty fun. Don't trust anyone that serves you food! My Mom fed me gluten twice ("Oh poo, such a little bit can't possibly make a difference") and a sushi restaurant got me with the tea - it was green tea with roasted barley. Yowza! You can never be too careful. Good news on the soysauce front, though, San-J is coming out with picnic packs of their Organic Wheat-Free Tamari Soy Sauce. Look for it. I wrote to them and they sent me some samples.

Spring 2006 - Suffered from Small Intestinal Bacterial Overgrowth (SIBO) - with diarrhea and belching, vomiting after a few months of blissful health. What - was I totally wrong, do I have something else? What is going on? Doc no help. "Just quit eating whatever makes you sick." Found out via the Internet that it is a common complaint for Celiacs that have gone gluten-free. Conquered it with a diet similar to Atkins but with fruits and veggies, just no simple carbs. Plus a course of antibiotics. Took a while, but it finally adjusted itself.

And - no more arthritis!!! Woo Haa!!! I am painting again, what a relief!

June 2006 - Small Intestine biopsy - doc said it was 'boring'. Well, what do you expect? I have been gluten free for 6 months now. And I am not going to do a gluten challenge. What, you sadist, are you intensely crazy?!? You surely must think that I am! Think again!! I only did it to make sure something else hadn't started as a result, like cancer. So I am proud to be boring.

2006 - Biopsy Negative

Fall 2006 - Hey, haven't barfed since April!! Applause, applause. Found some great foods. I highly recommend Chebe bread products. They are the closest thing to a bagel yet and don't fall apart the next day like all of the rice based breads do. They are tapioca based (they call it Manioc) Here's a tip - I add a tablespoon of yeast and a tablespoon of FiberSure to the basic mix. There isn't any sugar in the mix so the yeast doesn't rise, but you get the flavor, which makes all the difference in the world. And we can all use more fiber, can't we?

And BEER is here! Wasn't much of a beer drinker until I was told I couldn't have any and it became mowing season. Bard's Beer Dragon's Gold is out now. They are selling in the Eastern US now and over the internet, should be in some stores in the Western half of the US by the end of this year. I bought some on the internet. Costs a pretty penny, to be sure. It is a sorghum beer, and it is excellent. Like a dark amber. Very, very yummy. I have one when I really am craving it. My best friend was allowed a small taste, all others can get their own.....

Only bad news, I've gained 15 pounds since I went gluten free. My doc says that is normal for a Celiac to do so since they are absorbing more in the intestine. Rats. But, it is the most pleasant 15 pounds I have ever experienced. I think I'll keep them. (I am using reverse psychology)

And guess what, my doc was right after all. I've quit eating that which makes me sick.

Would love to trade recipes and ideas with others. Thanks for listening :)

Hi,

Enjoyed your post. The first part 2000-2005 when you were told to quit eating what made you sick and you could not possibly have Celiac, did the doctor tell you this or did you first hear about Celiac from some other source? This type of self-diagnosis through diet elimination to me is the best way to determine what you can and can't tolerate. The trick of course would be to do this before one got really sick. Education to the doctors and patients might one day allow this to happen. The main thing with a gluten-free diet is to know exactly what gluten is and where it is found to be sure it is eliminated. I bet some people who have tried the diet did not know this and gave up before giving it a true test. I never heard of Celiac disease until about a week before I was diagnosed through biopsy. Won't say for sure I would have stuck to the diet but I guarantee you I would have at least tried it because I did try to eliminate other foods with no success. I assure you wheat , rye and barley would have been the last things I would have thought could have been causing my problems. I blame that on all I had heard about what the average person said caused their irritated bowel. Things like fruit, dairy, tap water and coffee that I now consume with no problems. Shows how much I knew. Since being on the gluten-free diet health has been perfect.

Tom

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Hi Anne and welcome to the board. I agree that this has been a treat to read. I was smiling at your great outlook. I was just thinking today that I have to compile and sort all of the wonderful recipes that I have printed from members of this board. Think I will tackle that this week. I also never liked beer or pizza. Now I want some. My husband says what is with that. My reply can't have so want it. I can't wait until New Grist beer gets to AZ. I really like the taste of that beer as it tastes like a good regular beer. We have a place 45 minutes from us that makes wonderful gluten-free pizza.

I am so glad you figured it out before you got any older. I was almost 62 when I got diagnosed and had never heard of Celiac. I always marvel at all of you that are able to figure this out on your own. I kept looking at Cancer, diabetes, etc., before my older GP finally thought of Celiac. He said he had not thought of this disease since his exams in the 60's. He has now diagnosed over 60 patients with celiac. He tells them all that without me they would never have been diagnosed. I personally would have liked my diagnoses to have been a few years earlier in my life. But, you take what is handed out. Now, since you have regained your health, you can slowly teach your GP what he is suppose to look for. That way others will not have to go through what so many of us have gone through. My GP now does ALL of the panel, checks ALL diabetics, etc. I do not overpower him, but everytime I see him or his PA, I ALWAYS have some new tidbit that they both need to know. Believe it or not, they both are greatfull for the information.

I also need to tell you that your humor and your positive outlook will BOTH be wonderful additions to this board.


"Throw yourself a pity-party and you'll be the only guest." - Earlene Fowler

Diag. Celiac Disease by positive blood test 2/03/2004

Allergies - corn, soy, casein, egg whites and wheat

Morphia Scleroderma

Osteoarthritis

Hypothyroid and Hperthyroid

Essential Tremors

Asthma

Migraines

Fibromyalgia - diag. in 1978 when they called it Fibrositis

PAD Peripheral Artery Disease

Angina and Atrial Fibrillation

Gluten Ataxia

Vitiligo

Scoliosis of the spine (caused by malabsorption and it is horribly painful) This would be enough reason for someone to go gluten free.

Ocular Myastenia Gravis

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Anne:

Your post made me laugh. Glad you found out what was wrong and welcome to the boards! :D:D:D


Nostaglia is a file that removes the rough edges from the good old days!!!!

" 15 years of it's stress!"

"blood work show's a disease called celiac,

but it can't be that because it's rare!"

Diagnosed via blood and biopsy 2003

Not a medical professional just a silly celiac

offering support, my

experience and advice

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welcome sagemoon

What a story!I see you are an artist but maybe you should consider writing a book about illness & humor.....

You are a wonderful story teller I enjoyed every word........

You will be just fine with anything that comes your way --- you have a great attitude. I really can't say much for your doctor (nothing good that is)...................................It seems doctors that know anything are far & few in between these days. One thing is they all make big bucks for not knowing much.....

I believe life is what we make of it, I don't think anyone has a perfect life or health but with a positive thought process we can be happy in our not so perfect body.

The only thing I truly miss is the greasy Pizza Hut Pizza.I'm not a beer drinker but every once in awhile I enjoyed a draft beer. Now you got me wondering if there is one out there that may taste like a draft beer?A six pack would be very old before I drank it up.......

thanks for your story...

mamaw

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Hi Tom,

It was my doctor that told me I couldn't possibly have Celiac. I had come upon it and thought AHA!, but accepted her answer. You may imagine my pique when I came upon it again years later and there was new info on it and it wasn't an impossiblity anymore. I do respect doctors and realize that they have so many patients and just so much time, but because of this I am always researching health related issues to check their work. (But I will admit that I've wanted to take some of their condescending ways and give them back to them in an oh so uncomfortable manner) I had to be wary, though, since it is so easy to assume you are afflicted with a disease because there are so many symptoms. Now I am very busy projecting my disease upon others. It is hard to shake since there are so many undiagnosed and misdiagnosed cases out there. At least I had my family do the genetic tests. But, as I recently found out via Scott's Newsletter (by the way - it is THE best written info on the subject that I have come upon), genetic tests don't necessarily rule out anyone. Well, at least the studies are gearing up and it is exciting to see the new information come out every few months. Kind of fun being on the leading edge of something, in a sickly sort of way....


Anne near Seattle

Artist in Oil - Portraits, landscapes, abstracts

Wheat free December 2005

Diagnosed Celiac January 2006 by genetic testing and gluten-free trial

Gluten free January 2006

Egg IgG allergy diagnosed October 2006

Casein Intolerant October 2006 - Enterolab

Genetic testing revealed one Celiac gene, one gluten sensitivity gene

Healing after going gluten-free:

Severe arthritis in both wrists disappeared

Mysterious fatigue lessened, then energy reappeared

Low-grade depression lifted

Periodic vomiting followed by dry heaves finally abated after finding hidden gluten sources

10 months after Gluten-free

Short term memory greatly improved, can have 'normal' conversations

Symptoms of Adult ADD gone. Just the artist weirdness left, but I put that to use!

Husband diagnosed Gluten, Casein, Soy intolerant October 2006

Genetic testing revealed two Gluten Sensitivity genes, not Celiac

Thinks he is very lucky to be married to a Celiac. I agree.

"If you can't be a good example, be a horrible warning." - Catherine Aird

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