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
      104,640
    • Total Posts
      921,545
  • Topics

  • Posts

    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
    • It sounds like you're doing great. That's amazing that your anxiety has decreased like that. You're obviously doing something really good for your health. With the other things I'm sure they will get better in time. After I gave up gluten I had a bad year but overall it got better. Things like anxiety and insomnia massively improved over time with being gluten free. However, going Paleo (which you are on your way to with the no dairy too) really helped my anxiety, as did running and self-taught acupressure. In particular I found processed gluten free foods were awful for my mood. I know you have to find your own way but I really want to encourage you to see how you feel without that if you haven't already. I also can't afford therapy but when I did have it, that helped too but just being well, gives you the chance to sort your own thoughts and feelings out even without a therapist. Good luck
    • Thank you so much guys. Reading that last response and those from forum members who seemed to be mind-bogglingly sensitive to gluten at times helps me feel like less of a freak  Perhaps worse than the symptoms themselves was my fear that I'm the only person on earth who has gone through this and that if it continues, I will end up with all of my friends and family washing their hands of me because it would look to them like I'm the only one with this and so I must be crazy. It's really good to hear that the sensitivity can go down too. I've been holding onto this idea through the tough times, reminding myself that I also had really bad hayfever for a few years, and asthma at a different time and they both got better.  It has been a whole month since I had a bad reaction to gluten. It has also been two weeks since I even had a small reaction and I'm feeling SO much better. I'm still going to take every precaution I can but this feels worlds away from how it was. At my most risk averse, I had a day on holiday where I only ate bananas and avocados because I could eat them without them having been touched by human hands, even my own! (This was straight after getting sicker and sicker and hunting down what it was that made me ill. I found the refill bottles of soap in the house where I was staying and read that they had wheat in them - not an airborne reaction I imagine but when I washed my hands to prepare food it was probably contaminating my food. Plus because I didn't speak the language, I couldn't be sure the new soap I bought was gluten free.) Now, I am still avoiding environments with lots of gluten and staying clear of grains, but I have reintroduced rice using the food challenge method as directed by my dietician (since I understand that rice is, according to Dr Fasano, the lowest risk of gluten contamination of all the grains) and I am building my weight back up. My Paleo+Fasano diet has been assessed by a registered dietician to include every nutrient and micronutrient that I need so I guess having a really good diet is helping too. My husband has been able to see also that the last time he cooked gluten in the house was the last time I got ill. So it is reassuring for him to see that the sacrifice he is making is making such a difference to me. I also took the advice about new cooking utensils - thanks! I have my fingers crossed for me. I want this better health to continue but right now I'm happy to know that there is a break in the clouds and to know that I can feel like me again. A lot of the steps I have taken to avoid gluten would be seen by some as over the top but I can say that for me, when I introduced these steps, that's when I stopped getting reactions and it's all worth it. Good luck to everyone, sensitive or not, who gets into a bad place with managing their reactions. Hang on in there!        
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined