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cat40

17 Years Of Misery

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Forgive me, but as I have never done this before, (posted on a Forum) I'm not sure of the protocol so I am simply going to tell my story.

17 years ago I got very ill. Incredibly ill. It started slowly, so slowly in fact that I didn't even really notice at first. I had two young children, a job, a husband and was living over seas. There was no time for me to be ill and I really think that that is why it took me soo long to become concerned. I was having really bad gas. Then I was having diarhea. Then I was having diarhea EVERY time I ate. Sometimes, most times I couldn't even finish a plate of food and I would be doubled over with cramps and running to the nearest bathroom. This went on for quite a while. I lost an incredible amount of weight (not big to begin with..115 lbs) I went down to 89. (yikes! :o ) started having problems with my vision, my teeth and my hair. It was the last one that finally got me going. I went to part my hair one day to wear pony tails (I know..very cutsie) any way as I ran the comb down the back of my head I realized that I had a bald spot!!!! Came to find out that I actually had three !! Okay I know it says something really sad about me that it took losing my hair to go to a doctor, but really it just wasn't a habit in my family. You only went to the doctor if copious amounts of blood were flowing! Any way, I went to the Army doctors. They were baffled. The upshot was that the only thing to come out of that experience were some steroid shots to help my hair grow back. Slowly things seem to level off and I stopped having the intense cramps. I eventualy put the weight back on (mostly) but ended up wearing glasses and having hideous problems with my teeth. (I've got the equivalent of a Mercedes in my mouth and still look like a bag lady) I'm planning to have them all pulled and get dentures. :( Off and on over the course of the next 17 years I would have flare ups and drop weight, have incredible joint pain, problems with my sleep, bizarre muscle twitching and weakness, and incredible fatigue. I have been told that I have Fibromyalgia, possible gallbladder problems, heart arythmias, MS and appear to be entering premature menopause. Now I kmow that I sound like the worlds worst hypochondriac but please believe me when I say that it isn't so. I have seen exactly 4 doctors over the course of the last 17 years for a sum total of about 8 visits. I DO NOT WANT TO BE SICK!!!!! I want to know what is wrong ...deal with it and move on. Any way the reason I got on this site is because very recently as a way of supporting my neice on a quest to diagnose possible food allergies in her (she lives with me) we decided to start with wheat. We excuded it in all forms. Every last iota. It was hard. but produced almost immediate results for her and some interesting ones for myself as well. Around week two I cheated and had some pizza. Really bad idea as it turned out. Cramping,bloating,diarhea. The longer that I go without Gluten the worse that accidental exposures effect me.

So here's the question. Do I bother getting a diagnosis? Should I just avoid the Gluten and live a better life? The idea of going back to Gluten just to get the blood work really, really makes me unhappy.

Well that's it, that's the story.

Any thoughts?


Cathleen

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I would go for the diagnosis. You have been very ill with a systemic illness ... it may be celiac, but it may be something else. Lyme Disease has all the symptoms you describe, too, and many people with Lyme do much, much better off gluten (like me). That is why I'd go for the diagnosis ... you need to be sure you're treating the right disease!

That being said, after the testing for celiac, I would go gluten-free even if your results for celiac are negative (not before, it will affect the testing, you need to go back to eating it). IF the results are negative, then I would be tested for other systemic illnesses (especially Lyme, which is often misdiagnosed as MS, Fibro, Chronic Fatigue, and IBS). The reason I would go gluten-free is because your dietary response shows that you do have a problem with gluten whether you have celiac or not.


gluten-free 12/05

diagnosed with Lyme Disease 12/06

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I am truly sorry for your years of misery. With you symptoms, gluten sounds like the likely culprit, with the confirmation from eliminating it from your diet.

I would expect, with a strick gluten free diet you symptons will gradually subside.

Remember, you have had 17 years of damage to your intestines and it will take some time for the healing. It took me almost a year to feel like my old self.

Try reading as much as you can from these good people. You can't find a better source for Celiac information.

Welcome to the Board, you have come to the right place.


Lisa

Gluten Free - August 15, 2004

"Not all who wander are lost" - JRR Tolkien

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This is one of those decisions you have to make for yourself. If you can studiously and scrupulously expell all gluten from your diet without having to have a piece of paper from a doctor... then go for it. It sounds like you're unlikely to see a doctor to get to the bottom of your issues anyway. And it takes a LOT of doctors visits and sometimes seeing a lot of doctors before you finally get a diagnosis to hang your hat on.

But some people would probably find it very hard to have the discipline to be strict enough about their diet to follow through without a doctor clucking over them every step of the way.

I'm one of the ones that found enough proof simply by following the diet and I think that'll be enough to keep me on the straight and narrow.

There's also no guarantees you'll get an accurate diagnosis from a doctor either...

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I concur that you need a good medical workup anyway. So have gluten and get tested - but if results are negative, and you feel better going gluten free, then by all means go gluten free from then on.

Hoping you feel better and get a conculsion on this health problem.

Don't feel shy about asking any questions. Someone will definitely know the answer.


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

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Hello,

I am new here, as of today, I have had ibs for 25 years, or so I thought. My oldest daughter also had it. She did some research and started the gluten free diet about 6 weeks ago, she feels like a new person. I started the gluten free diet 9 days ago and I already feel so much better I can't believe it. No more stomach aches! I'm going to the doctor next week to talk about it but I'm not sure how far to push for tests. To be honest I really don't want to be sick again just to get checked. Are there a lot of suspected celiacs who just follow the diet and forgo the testing?

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There are a LOT of people who don't bother with a medical diagnosis. Unless you have some specific need for it, you don't need to pursue it.


"But then, in all honesty, if scientists don't play god, who will?"

- James Watson

My sources are unreliable, but their information is fascinating.

- Ashleigh Brilliant

Leap, and the net will appear.

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There are a LOT of people who don't bother with a medical diagnosis. Unless you have some specific need for it, you don't need to pursue it.

Sounds great, I will see what the doc says.

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Hi and welcome to both of you.

Isn't it great to feel better? In answer to the question about are there many people who don't get a diagnosis but rather self-diagnose on a positive response to diet, there was an interesting poll done on this site that asked how many of the members of this site had a diagnosis based on a positive medical test, eg blood or biopsy vs self diagnosed.

It was amazing to me that 60% of us have self diagnosed vs 40% with a diagnosis based on medical tests. I'm in the 60%, negative blood work and I couldn't bring myself to eat gluten again for a biopsy and really happy to feel better.

Angela

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Hi, welcome.

Please get a good and comprehensive checkup. They should also test iron levels, vit b levels, bone density, (among others). Plus you need a good baseline and you also need to know if there is anything else going on that could be treated.

Whether celiac testing comes up positive or negative doesn't really matter, you KNOW, from your elimination of gluten that it is a culprit.

My allergy dr (new) - is quite prepared to accept that I have gluten problems even without testing. She insists that the only way to know for sure about any food intolerance is through elimination diet. She is clucking over me even without the testing and insisting no gluten! None at all! So not all drs will insist on testing.

Sally


Sally

Aussie living in Philippines, Manager, Triathlete, Mum to 2 dogs, 2 cats & fish

___________________________________________________________________________________

Hypothyroid, diag. 2000, desicated thryoid 3 grains + T4 50 mcg.

Pituitary adenoma, 2002 - no treatment (no followup yet)

Polycystic, 2000 - no treatment

IBD by biopsy - end 2006 (cause not investigated)

Suspected Gluten intolerant/celiac - not diagnosed

Gluten Free - start Dec 06 (big improvement in tummy troubles, though still not 100%..)

Allergies suspected to Rice, Mango, Chicken, some fish (though testing)... still trying to work it all out.

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My Endocrinologist suggested I may have celiac. He did one blood test ttg or whatever and it was negative, but before I got the blood tests back I started the diet and within 2 days I felt much better. The Gas. Dr. wanted me to start eating gluten so he could take a biospy. I refused, as I know how bad I would feel.

I would see the Dr. and have blood work done to make sure you aren't anemic, etc. But if you feel so much better, why make yourself sick just to confirm a diagnosis? You have already found the cure!

My son was feeling poorly also and he's eating more "real" food. Steak, potatoes, and veggies. He says he hasn't felt this good in a long time.


Rheumatic fever at age 5 and again at age 6. Antibiotics for 6 years to prevent strep throat.

Anemia, Mono, Hepititis, Pernicious Anemia, Enlarged Heart, Osteopenia, Vitamin D deficiency, Ataxia, Digestive issues, reactive hypoglycemia, and on and on and on!

Following the SCD diet after gluten free didn't solve symptoms. Much better and getting back my life!

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Well, you could go through the often lengthy misery of doctor after doctor, test after test, etc., and then if they decide you have celiac disease they will tell you: EAT GLUTEN FREE!!!

Unless something has radically changed lately for the worse, if things are just miserable like they always have been, you could avoid the above scenario and just go gluten free and see if your health changes as a result of that.

You could also go to Enterolab and either get their full panel (in which you would find out if antibodies are in evidence, if you are casein sensitive as well, and you would get a gene test to find out if you actually have the celiac gene. All of this would give you a great deal of knowledge for very little $$ or effort and point you in a direction one way or the other. At the very least, do the gene test to see if you have the gene, and therefore, you would know if you have the predisposition.


CAROLE

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

Enterolab 1/2006

IgA & tTg Positive

DQ2-0201 (celiac) and DQ1-0604 (gluten)

Casein IgA positive

Mom has 2 celiac genes

Both kids have a celiac gene.

Lots of celiac disease in my family, both sides.

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Thanks for all the help, nice to know I'm not alone in the self diagnosis. I already know I have pernicious anemia and give myself b-12 injections every month. My daughter is also iron anemic. We pretty much fit about 70% of the symptoms list. This runs on my mother's side of the family, it's a trait shared by about half my aunts, uncles and cousins. I will urge the doc to check my vitamin levels. Whatever happens I'm done with gluten!

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You sure sound like me. It got to the point where I had diarrhea in the middle of every meal and afterwards too. The hair loss sounds, fatigue, etc. I was sick of being sick so I went gluten-free and my doctor was very suprised at the improvement in my health one month after being gluten-free. I hope you find the answers you need. This forum is a great place for advice and information.


Tapioca intolerant

First cousin dx'd with Celiac Disease

Grandmother died of malnutrition b/c everything made her sick... sounds like celiac to me.

Gluten-free since June 2005

Dx with IBS February 2005

Blood tests both negative (or inconclusive?) for celiac (in 2002 and 2004)

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I just want to thank everyone for their generosity. I know you will all understand when I say that it is damn nice to have people who you can go to who just get it. The more that I read here the more I wonder how many of my family members may have this. My father has 12 incurable diseases, scleroderma, dermatamyositis and rheumatoid arthritis being the main ones. They are all auto immune diseases. His whole family is rife with auto immune diseases. I can not help but wonder if all of these are merely (MERELY!) off shoots of a life time of self poisoning with Gluten. Seems a simplistic sort of logic I know, but I really can't help but wonder. Any way, I just wanted to say thanks for the support and all the advice. I still haven't decided which avenue to take (tests no tests) if it was just for myself I'd stay off the Gluten and just be happy, but I have two children and many many, many family members who would benefit from this information. Aahh well. No one said it would be easy.

Thanks

Cathleen


Cathleen

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Oh by the way. I've heard numerous people refer to something called Enterolab. What exactly are they referring to? Is it a specific Lab that everyone uses or what?

Thanks,

Cathleen


Cathleen

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