Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

So Sick! Is The Gluten Challenge Worth It?
0

12 posts in this topic

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!

0

Share this post


Link to post
Share on other sites


Ads by Google:

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.

1

Share this post


Link to post
Share on other sites

Thank you so much! That was extremely helpful!

Edited by txgirl
0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites




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.

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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 .

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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!

0

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      103,884
    • Total Posts
      919,476
  • Topics

  • Posts

    • I'm actually scared to go to the doctor and could use some advice
      Hello Elle Among this online community you are not alone in either your symptoms or how you feel about visiting the doctor.  I for one understand the anxiety that you are going through, my own weird nerve stuff and other puzzling symptoms have had me really scared at times.   So much you are going through could very well be gluten related, it really could.   But if it isn't, in the end it is worth trying to find out what it is going on so you can get the treatment you deserve. After all, it could have a really simple, treatable explanation, once the doctors know what it is. I remember reading on another website something that has helped me with my own health anxiety - if one can summon up the courage to go and see the doctor, one should pat oneself on the back and be proud of oneself for doing the right thing.  I'm not terribly keen on the idea of being a proud person - but I think it was meant in the best sense, and it is always good to do the right thing, even if one does it afraid!  It always makes me feel that bit stronger when I'm in the waiting room at the doctors! There is lots of great advice above.  Do take it and make sure you come back if you need further support. There are some fantastic people here to help.        
    • I'm actually scared to go to the doctor and could use some advice
      Hi Elle......do you think you would have better luck obtaining a full Celiac panel from your GP or a gastro doc?  You really need to be tested for Celiac because of all your symptoms.  Many other people probably thought they were dying of some horrible disease because they had so many symptoms that docs ignored.  Very common problem for us.  Plus, your Mom has had "IBS" all her life.  I should add that IBS is not a diagnosis.  No one needs to be told their bowel is irritated......they already know that.  This is where the medical establishment, no matter where you live in this world, fail us.  They need to find the root cause and there always is one.  You also do not need to have any gastro issues to be a Celiac but you do have some, along with all your symptoms mentioned.  Anxiety is a huge problem with Celiac Disease and for many, it goes away just fine on the gluten-free diet, without need of meds...which should always be a last resort measure.  I have never had an anxiety problem in my entire life until after I was diagnosed with Celiac.  I may have had it but with all the other numerous symptoms I had, the anxiety may have gotten buried somewhere.  But guess what? On the extremely rare occasion when I am glutened or cc'd, I get major anxiety for about 4 days and then its gone. B12 is a water soluble vitamin so whatever you don't use, it exits the body in your urine.  It is pretty damn hard to overdose on the stuff.  I take a B vitamin everyday, very high quality ones and my B12 is usually in the high 600 range.  Optimally, it should be between 650-800 so yours was abysmal pre-supplementation.  Absorption can also be affected by PPI's.  You did notice improvement with the tingling sensation and fatigue once your levels were way up so take notice of that. My biggest advice is to get your mother and you tested for celiac, with a FULL PANEL. Then you'll have to wait and see what that shows. You could always trial a gluten-free diet if all testing is complete and the results were either negative or inconclusive. That sometimes happens with people, especially if they have Celiac's other cousin......non-celiac gluten intolerance.  This would be the best route to go with regards to your anxiety, unless it becomes disabling and you need meds, short term. Make sure you tell them that anxiety is a HUGE symptom of Celiac and it is not normal for younger people to have extreme anxiety like that, for no reason. Good luck to you and please call and make the appointment. I understand your fear....I hate doctors and it's pure mistrust. But sometimes you have to address a problem head on.    
    • newbie diagnosed mom - testing 8 yr old now
      good to know. I am not going for a biopsy. I do not have health insurance, i know i know please no political comments. My children do. My husband and I don't right now. If we lived in another state, we would have coverage. I just made an appt to do a full blood panel for my daughter this week. I would rather find some confirmation for her through a blood test, i feel a scope is too invasive for a child. 
    • Did Jennifer Esposito Leave Town Amid $43 Million Gluten-Free Bakery Lawsuit?
      With a major lawsuit pending, recent reports put the former "Blue Bloods" star in Denmark. View the full article
    • I'm actually scared to go to the doctor and could use some advice
      Well, if I were you, I would go see your doctor and talk to him/her about all this.  Tell your doctor about your anxiety. When I finally did, my doctor prescribed a low dose of an anti-anxiety med and it has made a world of difference in my life.   About the whole thing with the B12 and the weird symptoms . Keep taking the B12 in the meantime to see if that helps again. But talk about it anyway.  If you want a celiac test, ask for the panel to be done. Your doctor may or may not want to send you to a GI for that. Remind him your mom is being tested. You do not have to wait for her results.  Work with your doctor if possible and if not, maybe find a doctor you can work with. If all you end up needing is b12, that's a good thing. If you end up needing more help, starting with your doctor and a heart to heart Talk will have you going in the right direction.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,928
    • Most Online
      1,763

    Newest Member
    Timea
    Joined