• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes
0
jcp

I Think I Did A Foolish Thing, And Now I'm Having Trouble

Rate this topic

Recommended Posts

Hi, everyone. I'm Julie and I'm hoping I can get some guidance.

I have had extremely bad IBS for about 7 years. I went from having some problems eating onions to having huge problems with essentially everything that wasn't meat, dairy, or simple carbohydrates.

I kept cutting things out of my diet, more and more all the time, and kept having trouble, but it would be better sometimes and worse sometimes.

Last year, I started going to a new doctor who asked if I'd ever been tested for celiac. I said no, I had a blood test, and it came back negative. Of course, I told her, it was going to be negative because I can eat those simple carbohydrates. It's veggies and fruits and fiber and all of that stuff that causes the trouble.

This year, it was worse than ever. She said, "Are you SURE you don't have celiac?" and I reminded her I'd been tested. She did other blood tests and I have a Vitamin D deficiency. She suggested I see a specialist, but honestly I just felt like I didn't have time. (I'm in law school.)

Still thinking she was crazy, I decided to show her! I'd try a gluten-free diet for a while and see, thinking that even if it helped, I would still be able to go back on gluten and then go forward with testing.

So, I went off gluten for about three months. The change was remarkable. Huge. The worst of the IBS symptoms basically went away in a few weeks. The rest faded over the months.

Still, I knew I had to go back on gluten at some point just to get definitive tests done. Blood work again, maybe a biopsy, seeing a specialist, etc.

So, I decided I'd try eating gluten again. I started on Thanksgiving. I had two meals on Thanksgiving that involved bread. By the end of the day, I just had a rather odd full feeling, like I'd been gorging all day, though I hadn't. Friday, more gluten. Really uncomfortable now, feeling like my stomach was stuffed full. Saturday, more gluten. Extreme pain by the end of the day. Couldn't take any more, stopped eating gluten, and am now back to feeling mostly normal on my fifth day back gluten free, though boy howdy were the days in between really incredibly rocky, with major digestive issues.

So, my questions:

1. If this is a gluten issue, why would I be suffering so much when before going gluten-free the symptoms were not so dramatic? Does this suggest it's more in my mind?

2. If this is a gluten issue, does this mean the weeks or months I'd have to stay on gluten to complete my testing would be THAT miserable?

I feel like an idiot for trying to go gluten-free without having a diagnosis, though I really thought it was not going to work. Now I feel a little trapped. Any help, advice, stories, or smacks upside the head would be welcome. Well, maybe not the smacks, but I probably deserve them!

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Hi there,

I hear ya. I used to think salad didn't agree with me because it would come out within 2 hours of eating it. I also thought I had a problem with alcohol. But nope, it was gluten the whole time.

If your "IBS" symptoms resolved while gluten-free, I don't think this is all in your head. Deep down you probably feel the same way.

As for continuing to consume gluten for testing purposes.... unfortunately, yes, if gluten is your issue then it won't get any better while you do the challenge. Keep in mind that the testing is looking for antibodies or blunted villi... basically this means you have to damage your body to the point doctors can see the damage in order to get a diagnosis.

I guess the real question is : do you think you need an official diagnosis?

You are an adult, so you can control your own diet. You will find there are many of us here who don't have an official diagnosis (me included). We know gluten is bad for us and don't need a diagnosis to make us stick with the diet.

Ask yourself if you really need that diagnosis.

Hth. And welcome!

Share this post


Link to post
Share on other sites

For reasons unknown, those with real gluten problems, who quit ingesting gluten for a period of time, then resume, frequently feel the bad effects much worse than before they quit. This is called a "gluten challenge." It is also done with other foods, you stop eating it, then reintroduce it and see what happens. A normal person, say, someone like my spouse who eats gluten free at home for long periods of time, but sometimes eats gluten out at business travel, feels no ill effect whatsoever from switching back and forth. I would get very sick if I tried that. I used to be able to tolerate some minor gluten cross contamination, (although I tried to avoid it) but now, having been years off of it, I can't. I've been hammered by certain food products that others can eat, and I have to avoid them, and be careful. So, you see, this is not in your head, this is a very real phenomena and it is another way to confirm that you do have a problem with gluten.

Secondly, sometimes the testing is less than perfect. Even if we lived in a world where the testing was completely accurate, there is still a category of gluten intolerance called non- celiac gluten intolerance, or NCGI. These people really do have a physical reaction to eating gluten, but they won't be "officially" diagnosed as celiac. I don't have an "official" diagnosis, but it does not matter to me because I am rock-solid on my need to be gluten free, and I have had several battles with physicians trying to insist that I couldn't possibly be celiac, based on stereotypes, because at that time there was not the more widespread awareness we have today of the more unusual neurological symptoms.

I don't know what would happen if you went back on gluten full time, but.... sometimes people do give up and just go gluten free, so they can avoid the side effects. Your physician may give you her blessings to be called a "gluten intolerant" based on your "gluten challenge," especially if you then can bring up your vitamin D levels. (has anyone looked at your bone density, I had that at an early age, another hint that they missed.)

If you are not doing so already, it is a good idea to take a gluten free multivitamin supplement, being sure to get a B complex in there, and a gluten-free calcium, magnesium, and D supplement, as we need more of these than regular people.

Share this post


Link to post
Share on other sites

My MD made a diagnosis based on a genetic test, which you can do without eating gluten, and my observations when going gluten free. We have since verified some damage by a nutrient absorption test and food intolerance tests.

Diana

Share this post


Link to post
Share on other sites

Thank you all for your good information and advice.

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.'

I was hoping someone would say that once I got over the first few days or week, I'd settle back into my previous level of discomfort. I know, pipe dreams. :D

Share this post


Link to post
Share on other sites
Ads by Google:


My IBS vanished when i went gluten free and took the vomiting with it (it was really bad, every day).

I too had it for years (it progressively got worse from one to two times a month to the daily stuff), about... 9 years? I think? I remember when it first started. It got to the point where when i'd go out i'd have to map the places out and take peptobismol beforehand.

Oddly enough, for the times i was exposed to gluten after i went free, i went to the opposite extreme :blink: so weird.

Share this post


Link to post
Share on other sites

I would like to point out that you have TWO very positive tests right here. You feel better without gluten. You feel worse with it.

  • Upvote 1

Share this post


Link to post
Share on other sites

Do I need the diagnosis? I honestly might. I have a desire to have it be scienfically verified, you know? I think because my diagnosis was IBS for so many years. But boy oh boy was I in pain. So I need to figure out what I can live with.

IBS isn't really a diagnosis of anything. It's like telling someone they have migraines or fibromyalgia. All it is is a label for a set of symptoms. There's never a cause identified with it, nor effective preventative treatments provided.

I have no official diagnosis, but I can't tell you how liberating it is to not have to know where every publically accessible washroom is at my destination, and the routes there and back, when I need to go somewhere. Also, not having the frequent .migraines, accompanied by vomiting so violent that I could do nothing more than lie on the bathroom floor for entire days, is also a freeing feeling.

You did conduct a scientific experiment (elimination diet). With reintroduction of gluten, you returned to feeling ill. That is a legitimate test.

If you decide to tough out the gluten challenge in order to have testing done, what will you do if the tests come back negative? False negatives are a real possibility. Or you may be non celiac gluten intolerant (NCGI), which means you test negative on blood and biopsy, but respond to the diet. Just because you may not get that label of "celiac", does that mean you'll continue eating gluten and making yourself ill?

Share this post


Link to post
Share on other sites

I have to agree that you were positive on the best, most reliable test we have. It is too bad your doctor didn't rerun your testing while you were still eating gluten. Especialy if you were tested a few years ago. Science has fairly recently developed some much better tests. You could also have been a low positive back then as some doctors will call a low positive negative.

Talk to your doctor. It sounds like the doc was pretty certain your symptoms were celiac. You may get your official diagnois based on your low vitamin levels, resolution of symptoms gluten free and your reaction to the gluten challenge.

You could also get gene tested. Be aware that even though the two genes most commonly associated with celiac are the ones most often found, there are others. The gene test can be helpful but it can not rule celiac out firmly just because DQ8 or DQ2 are not found

Share this post


Link to post
Share on other sites

Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?

Share this post


Link to post
Share on other sites


Ads by Google:


Thanks for putting this in perspective for me. I was reading something a few weeks ago where a GI doctor really didn't want patients to go on a gluten free diet without being diagnosed with a problem because gluten free diets are deficient. Is this anything to be concerned about, if I add in a multi-vitamin, etc.?

Deficient? In what possible way?

A proper gluten free diet, based on whole foods, not processed gluten-free crap, is probably one of the healthiest diets one can follow. Wheat products in and of themselves are naturally nutrient deficient, which is why they tend to be enriched/fortified.

There's no harm in adding a multi vitamin, per se, but it is no more necessary on a gluten-free diet that on a typical western diet (or, IMO less necessary on a gluten-free diet).

Did you read this on the web? If so, do you have the link?

The real trouble with trying a gluten-free diet prior to diagnosis, as you've discovered, is that testing requires eating gluten, which many people who have a gluten issue cannot handle as it makes them so ill.

Share this post


Link to post
Share on other sites

I'm not sure what deficiencies. I read it here:

As Lara Field, pediatric dietitian specializing in celiac disease at the University of Chicago (http://www.feedkids.com) points out, going gluten-free can also lead to certain nutritional deficiencies, so you should be certain of the diagnosis before committing you — and perhaps your entire family — to this diet.

I went to that website, but didn't see any deficiencies listed there.

Share this post


Link to post
Share on other sites

When I was diagnosed I went to a nutritionist that explained how I would no longer be eating processed foods fortified with vitamins and minerals -- I ate very few of these for the 43 years before diagnosis - so it was a non-issue for me. Whole foods and supplementing any deficiencies caused by Celiac Disease will fulfill all dietary requirements far better than the SAD (standard american diet).

Share this post


Link to post
Share on other sites

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.

Share this post


Link to post
Share on other sites

The biggest part of the concern is when people stop eating fortified bread (which is a large source of folic acid for many people in the US). Of course, if you have a well balanced diet with plenty of fruits and vegetables, that's not a problem.

Tangent, but would you happen to have a source for this, or a resource you could link me to with more info on what other nutrients most often get lost when one stops eating processed/fortified bread products? They have been a big part of my diet so that's probably something I ought to think about; I've been primarily focusing on protien and iron (fiber would be an issue but I eat plenty of whole fruits and veggies). (God only knows how much of it's actually been getting into my system correctly anyway if this really is celiac, though.)

Share this post


Link to post
Share on other sites

I'm so glad I started this thread. Thank you all for clearing up some misconceptions I had and for talking sense. I'm not always the most sensible person!

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
      108,932
    • Total Posts
      943,580
  • Member Statistics

    • Total Members
      67,236
    • Most Online
      3,093

    Newest Member
    TinaKaye
    Joined
  • Popular Now

  • Topics

  • Posts

    • In Austin, Wildwood Bakehouse and Wilder Wood Restaurant are totally gluten free.  I had the chicken fried steak and gravy and onion rings!!!  Awesome!!!  
    • Hi there I have this exact same thing.. however I don’t have celiac that I know of.. I found this when google searching for what the heck is wrong with my face.  I was wondering if you ever found out.. or if it just went away. Thanks
    • I have read the newbie 101 and have been careful about reading labels. I'm the only one that's gluten free in my household, so they could be contaminating me. I was eating gluten for 6 weeks after my blood test because it took that long to get an official diagnosis and my GP told me to still be eating it for the tests to be accurate. It was probably too soon to retest, but the test was accidentally ordered by the lab. I have been having an increase in joint pain over the last couple months and my rheumatologist ordered lab work. The lab saw the celiac panel had been ordered, but didn't see results so they added it on because they thought it still needed done.  My gut issues are starting to get better, but I'm thinking the joint pain might have been from the celiacs because all of the rheumatoid tests came back normal for the first time in twenty years.
    • Hi and Welcome to the Forum.  I am glad that you are here! As with a lot of things in life, try not to compare yourself to other people. You are trying to be the best version of yourself - not Jill, Annie, or Maya.  People make a lot of foolish decisions in the world and it does not mean that you should do it too.  Also, many people are gluten free for a lot of reasons that aren't celiac. One of my best friends has gluten sensitivity but not celiac.  He eats a lot of food that I won't touch due to possible cross contamination which he doesn't worry about too much.  Be true to yourself and keep your self healthy.  It is so hard, but it's better than getting sick! I hate not being able to partake in yummy food at parties, but I have learned what junk food I can eat.  I will make sure to buy some tortilla chips or Fritos for picnics.  I freeze gluten-free cupcakes to eat when we celebrate birthday parties (I can just take one out of the freezer and go).  I make sure to take a dish to share to potlucks.  I ask permission at restaurants and parties to bring my own food - no one has ever said no, and when there is a time to celebrate, I splurge on something I really like.  Fortunately, there are a lot of gluten-free foods that I really like. Do i miss pizza and really good burger? YES! And sometimes, I still feel awkward, but life is so much more than food.
    • If Small was going to get rid of anything in a takeaway meal, it would be the bread with all its dreaded gluten. However, many scientists and nutritionists argue gluten is not a problem for people who do not have celiac disease or who are not "gluten-sensitive". Massey University senior lecturer in food ... View the full article
  • Upcoming Events