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So Sick! Is The Gluten Challenge Worth It?


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#1 txgirl

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Posted 07 December 2012 - 03:32 PM

If you met me, you would never know that I am in ill health. When I try to explain it to people, they say, "Really? You look great to me!" However, on the inside, the part that no ones sees, I'm a mess!

I've had physical problems for as long as I can remember. Colic as a baby, ear infections and stomach pains growing up. Diagnosed with IBS at 19. Hospitalized for elevated liver enzymes at 21. Diagnosed low blood sugar at 25. Emergency gall bladder removal at 25. Diagnosed low thyroid at 28. Diagnosed Fibromyalgia and Chronic Fatigue Syndrome at 33. At 42 I suffered a heart attack due to prolonged emotional stress that caused a blood vessel to go into a spasm. Increasingly low Vitamin D for the past several years (my last test it was at 14). And on and on and on it goes.

My mother has hypothyroidism and lupus. I had a sister that died at 29 from complications of juvenile-onset diabetes.

Several years ago, I had a friend suggest that I might feel better on a gluten-free diet, so I tried it. It worked! Gone was the brain fog, headaches, constant nausea, digestive problems, etc. However, at the time, I didn't even know what celiac was, so I just continued on with being gluten free because I simply felt better. When I wanted to splurge on my past favorites, I would. But as always the familiar symptoms followed. About a year ago, I finally learned about Celiac. I tried many times to get back on gluten so that I could be tested, but always became ill. I finally made an appointment with a gastroenterologist that specializes in Celiac. He did gene testing and it came back positive for DQ8. He instructed me to do a gluten challenge for 4 weeks so that I could get an endoscopy done. However, 1 day into this and I am SO SICK.

What does it take to get an official diagnosis? And is it worth it to put my body through this? I only wish I had known to get tested before I went gluten free. Thanks for listening. I would so appreciate any input!
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#2 IrishHeart

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Posted 07 December 2012 - 05:12 PM

I tried many times to get back on gluten so that I could be tested, but always became ill. I finally made an appointment with a gastroenterologist that specializes in Celiac. He did gene testing and it came back positive for DQ8. He instructed me to do a gluten challenge for 4 weeks so that I could get an endoscopy done. However, 1 day into this and I am SO SICK.

What does it take to get an official diagnosis? And is it worth it to put my body through this? I only wish I had known to get tested before I went gluten free. Thanks for listening. I would so appreciate any input!



If you really want to see if you can get a diagnosis, your GI can DX you based on:
(1) your symptom resolution from a gluten-free diet
(2) taking into account the positive genetic test
(3) your return of symptoms on the gluten challenge

(4) the many Autoimmune diseases in your family
(5) your own medical history (fibro is a blanket Dx for "muscle pain" and we hear it all the time)

Please, read this article and print it out. Dr. Alessio Fasano, one of the leading celiac researchers explains the better criteria for making a diagnosis.
http://celiaccenter....August 2010.pdf
In part, he says: “The biopsy, considered the diagnostic gold standard, has been recently questioned as a reliable and conclusive test for every case”.
I hope this helps you.
No matter what, if gluten makes you sick, stay off it. Dr. Fasano, Dr, Green et al. recognize gluten sensitivity as a real medical condition– and soon, everyone will follow suit.
Always–and I mean always!–get copies of any tests done and keep a file for yourself. This is very important. Trust me on this one.
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#3 txgirl

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Posted 07 December 2012 - 06:54 PM

Thank you so much! That was extremely helpful!

Edited by txgirl, 08 December 2012 - 01:22 AM.

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#4 Celiac Mindwarp

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Posted 08 December 2012 - 02:00 AM

Go with what IH says.

I lasted 3 weeks on the gluten challenge, long enough to make me sick for about 4 months, not long enough for blood tests or biopsy to be positive.

More enlightened doctors can diagnose on your history, less enlightened ones may be persuaded.

There is loads of advice here on making sure you avoid hidden gluten etc, and to get support.

I will not get a diagnosis until medical science advances. Currently I am 'Non Celiac Gluten Intolerance cannot rule out celiac'.

I will be gluten-free for life whatever doctors say.

Good luck
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- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image

#5 IrishHeart

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Posted 08 December 2012 - 06:13 AM

There are many who will tell you it is not worth it to try and get a DX because like me, they would be so ill and incapacitated by the
end of the first week.

There are many who will tell you 2 weeks is enough to get a positive result.
There are others who will tell you 12 weeks (because that is what the Univ. of Chicago Celiac Center recommends on their website)

"There is an abundance of stories about people who begin a gluten-free diet, find that they feel better then decide they want a firm diagnosis of celiac disease.They are facing several problems. First, they may be gluten sensitive without the intestinal lesion of celiac disease. This is very likely since about twelve percent of the population is gluten sensitive, but only a little more than one percent of the general population has celiac disease. Another problem faced by gluten-free individuals who want a diagnosis is that it can take more than five years after returning to a regular gluten-containing diet before the characteristic damage of celiac disease can be seen on a biopsy.. Simply put, after beginning a gluten-free diet, only a positive biopsy is meaningful. A negative biopsy does not rule out celiac disease.

A variety of opinions have been offered regarding how much gluten, for how long, should result in a definitive biopsy. The reality is that no such recommendation is consistent with the medical literature.
Some people with celiac disease will experience a return of intestinal damage within a few weeks of consuming relatively small amounts of gluten. Such brief challenges are valuable for these individuals. However, many people with celiac disease or dermatitis herpetiformis will require much larger doses of gluten, over much longer periods, to induce characteristic lesions on the intestinal wall. Unfortunately for these latter individuals, a negative biopsy after a brief gluten challenge can, and often is, misinterpreted as having ruled out celiac disease. Blood tests can compound this problem. If, as seems likely, celiac patients who are slow to relapse are also the ones who develop milder intestinal lesions, they are the very celiac patients for whom blood tests are very unreliable."

That article is here:
http://www.celiac.co...-EdD/Page1.html
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"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#6 AnnieInItaly

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Posted 08 December 2012 - 06:52 AM

I am going through pretty much the same thing as you (luckily no heart attack or organs removed, but I've been hospitalized more times than I can count in the past 12 years), and I've felt 100% better being off gluten. About a month ago I finally got in to see a gastrointerologist, and she convinced me that they need to do a scope and biopsy, and I'm halfway through two months of eating gluten before the test.

The first week I felt horrible. WAY worse than I ever felt while I was eating gluten. I still feel quite bad, but it's tolerable.... basically how I felt before. I'm fuzzy headed, have gastro upset, migraines everyday and can't feel my hands, but I can still function enough.

For me it is important for three reasons to know if it is celiac or not: 1) a significant portion of my extended family have the same problems as me, but refuse to try going gluten free because they don't want to be inconvienienced. If it IS celiac, they probably have it too, and maybe this will convince them to do what they need to do 2) I want to know if I'm seriously risking my health if I have very slight traces of gluten in my food and 3) The Italian government will cover a good portion of my grocery bill if I am celiac.

I think it is worth it to feel horrible for a few months, given the tradeoff. Mainly though, if it is celiac, I want my family to take care of themselves since they have the same thing going on with them as I have.
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#7 GFinDC

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Posted 09 December 2012 - 06:34 AM

If the gluten challenge for testing is worth it depends on how you think about it. If you need a piece of paper from a doctor's office to tell you not to eat gluten, then it is probably worth it. Be aware though that the results can still be negative even after a 3 month challenge. And if you develop a permanent issue from the challenge that doesn't resolve after going back to gluten-free then it may be a bad choice. None of us can tell you for sure that will or won't happen, it is risk you take though.
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#8 a1956chill

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Posted 09 December 2012 - 06:48 AM

If the gluten challenge for testing is worth it depends on how you think about it. If you need a piece of paper from a doctor's office to tell you not to eat gluten, then it is probably worth it. Be aware though that the results can still be negative even after a 3 month challenge. And if you develop a permanent issue from the challenge that doesn't resolve after going back to gluten-free then it may be a bad choice. None of us can tell you for sure that will or won't happen, it is risk you take though.

this
your body , your choice

I thought I needed an official diagnosis but ultimately when I " finally" got one it really did not make any differnce . My diagnosis did not make it any eaiser for my children or grandchildren to get an official diagnosis ( should have but did not ,, stupid, uneducated doctors :angry: ...)


Official or not the only treatment is a strict gluten free diet .
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Gluten free Oct/09
Soy free Nov/10

numerous additional intolerances,, i.e. If it tries to kill me I do not eat it .
After 40+ years of misdiagnoses I was diagnosed with:
Dermatitis Herpetiformis : Positive DH biopsy...... Celiac :based on DH biopsy and diet response.

Osteoporosis before  age 50
Hashimoto's thyroiditis disease .

Diagnosed type 2 Diabetes 

Osteoarthritis

Gilbert's Syndrome , confirmed by gene testing


#9 IrishHeart

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Posted 09 December 2012 - 07:42 AM

this
your body , your choice

I thought I needed an official diagnosis but ultimately when I " finally" got one it really did not make any differnce . My diagnosis did not make it any eaiser for my children or grandchildren to get an official diagnosis ( should have but did not ,, stupid, uneducated doctors :angry: ...)


Official or not the only treatment is a strict gluten free diet .



Well said, Chill.
Nor did my official DX have any of my family members take it more seriously and get tested themselves.
I finally gave up urging them to do so--for my own sanity.

It should not be this hard to get a proper diagnosis, but sadly, it is.
Until that changes, people have to decide what's best for themselves.

No one needs anyone's permission to change his/her diet .
  • 0

"Life is not the way it's supposed to be. It's the way it is. The way we cope with it makes the difference." Virginia Satir

"The strongest of all warriors are these two - time and patience." Leo Tolstoy

"If you want to lift yourself up, lift up someone else" Booker T. Washington

“If idiots could fly, the sky would be like an airport.”― Laura Davenport 

"Do or do not. There is no try. "-  Yoda.

"LTES"  Gem 2014

 

Misdiagnosed for 25+ years; Finally Diagnosed with Celiac  11/01/10.  Double DQ2 genes. This thing tried to kill me. I view Celiac as a fire breathing dragon --and I have run my sword right through his throat.
I. Win. bliss-smiley-emoticon.gif


#10 guest134

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Posted 09 December 2012 - 10:02 AM

Lmao at looking like you are fine. I went into a clinic for a second opinion on my blood work and the doctor looked at me and said "You don't look like you have celiac" what on earth is that suppose to mean? It is my intestines that are damaged not my exterior!
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#11 txgirl

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Posted 09 December 2012 - 04:56 PM

Thanks everyone for your input and sharing your experiences with me!

Update: I thought that for my peace of mind I would try the gluten challenge and get the biopsy, but I didn't even make it two days. I became so ill that it simply isn't worth it. I refuse to do more damage to my body. Like most of you said, I could go through all this and it still not be long enough to produce a positive biopsy - especially since I have been gluten free for so long. I called and let me GI know and he agreed. He doesn't want me doing it if it makes me THAT sick.

What I keep reading all throughout the boards on this forum is "listen to your body". That's what I intend to do. Thanks again, everyone!
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#12 Celiac Mindwarp

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Posted 10 December 2012 - 02:06 AM

Glad you made a decision. Good too your GI agreed making yourself so sick wasn't worth it. Hopefully your genetic testing plus response to gluten and diet might get you a diagnosis.

If not at least you know the way to go - gluten-free :)
  • 0
- Symptoms from 2001, maybe before. Across 20+ years, these have included, vomiting, D, migraines, headaches, recurrent miscarriage, inflammation problems (failure to heal from injuries) brain fog, anxiety and more!
- Elimination diet using Atkins, 2003 – excluded wheat, caffeine, quorn. 2005, excluded sesame, alcohol
- Started diagnosis route April 2012, blood tests, endoscopy – said negative, gluten challenge, clearly something very wrong, had to stop after 3 weeks.
- Gluten Free, August 2012, Corn Free, September 2012. Removed most processed gluten free foods.
- Genetic testing, December 2012 – negative – Diagnosis – Non Celiac Gluten Intolerance (NCGI)
- Elimination diet, January 2013 – all of the above plus dairy, legumes, all grains, sugar, additives, white potatoes, soy. Reintroducing sloooowly now. Health improving.
It's not that I'm so smart, it's just that I stay with problems longer. ~Albert Einstein Posted Image


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