• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • 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 FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) 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 Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Help Figuring Out Exactly What My Issue Is
0

5 posts in this topic

New to the forum, hi guys  :D

 

I post this here because I'm fairly certain my intolerance is not(or at least not entirely) related to gluten, and I know i'm not celiac.

 

I've always been a little tired after eating, and for most of my childhood and teenage years I ate primarily bread, and quite horribly. A few years ago when I started dating my now wife I got mono, and probably overdid it. After that I would basically become completely non-functioning after having lunch. In this order, BP skyrocketing, increased heart rate/palpitations, irritability would be an understatement(and i'm a very cheery person) soreness in my back muscles and after a couple hours a sudden tiredness that would almost make me collapse on spot. Never any other stomach or intestinal issues though. Well after nearly a year of gaining 50 pounds despite being active, constant brain fog and the feeling of a burning ulcer in the pit of my stomach, I finally got it together enough to do a completely gluten free diet. After 2 days I was sold and haven't intentionally eaten anything contaminated since, and have since lost all the weight I had gained.

 

But the more I read about it and experiment with foods trying to find out what exactly it is that affects me, the more I don't believe it's gluten. The first tip was that I was never had an adverse reaction whenever I would have a beer, even wheat beer. Then, I realized I was okay having ezekiel bread even though it has right under the ingredients organic wheat flour and organic wheat gluten. And then I started having, very randomly, similar reactions to gluten free flours, though few and far between. I've done elimination diets for a few of the more prominent foods and found most to not bother me.

 

So i'm wondering, what on earth could it be? My initial thought was that it might be some form of pesticides used on most wheat fields, because I could handle the organic ingredients in ezekiel bread, and oats bother me unless I eat those from dedicated oat fields, and I'm okay with regular soy sauce and barley tea, which made me wonder if it might have something to do with it being processed and in liquid form.

 

I eat a generally grain free diet now anyway, so I'm not intending to add whatever toxins back as a regular diet staple, I would just appreciate any outside opinions from those more knowledgeable than I.

 

Thanks for any help  :)

0

Share this post


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


You relate to us  a resurgence of good health off gluten. 

 

I am not sure why then you are questioning that gluten may be an issue for you.

 

How can you be sure it is not celiac or NCGS? Were you ever tested for celiac disease?

 

But for the record, none  of us can eat ezekiel bread or drink barley tea as you can, so I doubt you have celiac.

 

This is not a medical site where we diagnose people. hon.  It would be very foolish for us to speculate what it may be.

 

We can offer advice about testing for celiac or managing a gluten-free diet.  

0

Share this post


Link to post
Share on other sites

You relate to us  a resurgence of good health off gluten. 

 

I am not sure why then you are questioning that gluten may be an issue for you.

 

How can you be sure it is not celiac or NCGS? Were you ever tested for celiac disease?

 

But for the record, none  of us can eat ezekiel bread or drink barley tea as you can, so I doubt you have celiac.

 

This is not a medical site where we diagnose people. hon.  It would be very foolish for us to speculate what it may be.

 

We can offer advice about testing for celiac or managing a gluten-free diet.  

 

For curiosity's sake, As I had said I noticed the most improvement cutting out wheat but I've since been able to eat things I know are contaminated with gluten, and I was just wondering if anyone had any scientific idea of what other little thing something might be, as I noticed this was a forum with a multitude of intolerances. I've not had much chance to talk about it with anyone in my region as most people in my family and the like equate a food intolerance with picky eating.

 

I can follow a gluten free diet and for the most part be fine(as I said I wondered if it might be something else for the minor reactions I have supposed gluten free foods) but if it isn't that in particular I would just like to know what other possibilities might be, not looking for a diagnosis or anything. There isn't just alot of information on non-celiac gluten sensitivity to be found from a google search.

0

Share this post


Link to post
Share on other sites

Actually, this is a forum for celiac disease and the section "other food intolerances" means IN ADDITION to celiac.  Often, a celiac may have other food intolerances beside gluten. Most common are corn, dairy, eggs and soy. Often, these resolve after the gut heals. 

 

There is little information about NCGS because it is not really understood. It has many symptoms very similar to celiac, but does not cause villous atrophy as celiac does. Some celiac researchers, most notably Dr. Fasano's team, are working on establishing diagnostic protocols for NCGS because they know it exists and they know people suffer symptoms of it. But they do not believe it is as large a problem as some people on the internet suggest. Their studies indicate maybe 15% of the population is effected. 

 

Again, if you can tolerate gluten, I do not think you have a gluten sensitivity, hon---but maybe you should consider a celiac test just to put your mind at ease.? You will need to be consuming gluten for it to be a valid test. 

0

Share this post


Link to post
Share on other sites

You might want to have a look at the chapters on Foods to Avoid in 'Perfect Health Diet' by Paul Jaminet and Shou-Ching Jaminet.  There is info on food, and on things added to food, that may have toxic elements.  (The chapter on cereal grains is fascinating.) The rest of the book is mainly about eating well and getting proper nutrition.  

0

Share this post


Link to post
Share on other sites
Ads by Google:


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
      106,407
    • Total Posts
      930,386
  • Member Statistics

    • Total Members
      63,832
    • Most Online
      3,093

    Newest Member
    KDR
    Joined
  • Popular Now

  • Topics

  • Posts

    • Kaiser offers the full panel, but a primary care MD can not order it -- only a GI.  Again, a visual is not needed.  Damage is usually severe if it can be seen visually (e.g. Scalloping, etc.).  Villi are microscopic though.   When you got the referral, you probably should have found a GI on your own by searching through the Kaiser directory and finding one who has some mention of celiac disease in his bio.  Too late, but that is kind of how it works.  Your PCP does not know the GI docs.  The scheduler just makes appointments.  So, now,  that you have been referred to a GI, you can probably schedule another appointment on your own by passing your PCP.  Wait first for the pathologist's report.  They might not put it on the patient portal, so get a hard copy for your records.  If it is negative and they took four or biopsies, you will have your answer. Then you can consider trialing the diet.  If they did not take enough samples, ask for the DGP and EMA tests, including the control test IGA deficiency (which affects 10% of celiacs, but do not quote me on this).  You could wait a few years until you think damage is severe enough to find.  celiac disease can be hard to diagnose.  It can develop at anytime.   Don't forget you might have a gluten sensitivity too and not celiac disease.   Kaiser responds well to requests in writing.  Try the patient portal first before a registered letter.  If they are not following the standard level of care, they are at risk for a lawsuit.  Be nice.  Say something lame in your letter like,  "We had such a nice short visit, so I  forgot to ask ....blah, blah, blah." My own relatively new PCP is still learning about celiac disease.  That is okay.  At least she has an open mind.    
    • It is gluten free...I eat it regularly and have had no issues and it tastes yummy. 😀
    • A quick update: I emailed my primary doctor and she is on the same page as the GI doctor, saying the Endoscopy looks normal. Even before we've gotten the biopsy back.  By the way, I should mention I'm dealing with Kaiser in the Bay Area, CA and everything I've found about Kaiser on these forums is horrible and similar to my own experience.  I specifically asked about all the components of the full celiac panel and that I would like to get it and all she said was: "The lab tests are not perfect. Although they may indicate an increased risk for celiac, they are not as specific as the biopsy." So, now we should just ignore the positive IgG? How am I supposed to know if I'm IgA deficient if they don't test for that? I replied and asked again and she said that Kaiser doesn't offer the full panel. Why not? And I said I want vitamin and iron tests and no reply to that yet.              
    • Thank you so much for all the help and support you have given me. I cannot thank you enough. I am ever so sorry to post again here but wondered if I could check with you about this. When at work, I very rarely get chance to eat a lot and so have always been eating the Milky Way UK bars, which I believe contain gluten or barley. I usually have around 6 of these as they tide me over until getting home. I also have two slices of bread on a morning. I was wondering whether this would be sufficient as I am worried in case I haven't had enough gluten?  Thank you for everything and I wanted to apologise for being a nuisance on here.
    • Thanks Matt I appreciate your response and assistance getting " moved to my own thread" thanks so much. I do have the results of my labs they took and am unsure which labs are which so I will try to attach them and perhaps someone can help me decode them.😂   Thanks again Heidi  
  • Upcoming Events