• 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

Sick For 23 Years And Wondering About Gluten

Rate this topic

Recommended Posts

Hi, everyone...

I just found your forums (and site) today when doing a search on "shortness of breath after eating" to see what came up. Brief summary of my situation... I'm now 52 years old and have been sick to the point of being disabled since Nov. 1989. My first symptoms were dizziness and severe fatigue and weakness. It got so bad that for 6 years I had to use a special high-back wheelchair just to go anywhere because I was too dizzy and too weak to walk or even hold my head up (had "jelly legs). Was diagnosed in 1991 with Chronic Fatigue Syndrome. After that, over the years, was diagnosed with lupus, fibromyalgia, environmental illness (Multiple Chemical Sensitivity), and Type II diabetes. In 1996 we started avoiding chemicals like perfumes and cleaning products and my dizziness and weakness improved to the point I was able to forego the wheelchair. Still exhausted most of the time, though.

Also have had a weight problem since age 7 which has now turned into morbid obesity (325 lbs., 5'4"). No matter what I do, my weight won't drop. Thyroid tests come back normal, but my thyroid is NOT optimized (I'm on meds) - still have all the hypo symptoms - major hair loss, dry skin, fatigue, weight gain, fluid retention... Finally in 2010 I went to a Lyme Specialist and using the right tests and the right labs (there are only a few in the country) I tested positive - had tested negative many times before. So I've been undergoing Lyme treatment - but with only minimal improvement.

Earlier this year I started having really bad fluid retention in my legs, shortness of breath, and chest pains. Went through every cardiac test but all was normal. Have been on lasix to keep the fluid down. But a few weeks ago, it seemed the lasix quit working. Swelling in my legs, joint pain, severe tendonitis in both knees and hands, shortness of breath, and dizziness all got worse. Had an EKG which was fine. I started noticing my "episodes" of rapid heart rate (heart pounding and racing) and shortness of breath seem to happen after meals - usually in the evenings, but not always. This got me to wondering today whether it could be food allergy related (or sensitivity). Which led me to your forums.

I've been just barely skimming the posts but it sure seems this might be what I'm dealing with. My Lyme doctor did suggest I look into going gluten free a while back, but I hadn't done so yet. Just feel SO bad all the time - can barely function, feel "half-dead"... But if there's a chance that this is the REAL culprit - and that I really COULD feel better - ???!!! - then I need to find out! I have been tested for celiac over the years by a couple of my doctors (one is a Naturopath) - but it always came back negative. Also had endoscopies for stomach pain attacks which I thought might be gall bladder but it just showed "gastritis" and a hiatal hernia. So I'm thinking that if I AM having problems with gluten, it is probably an intolerance rather than true celiac - ?

Anyway, I'm really thinking I need to see what happens if I go gluten-free. If this is my problem, how long would it usually take to notice a difference in how I feel? Would a week be enough to tell anything? I'm thinking of trying to make a big pot of vegetable soup or something that's simple but that I like and that wouldn't have gluten. And maybe during the week supplement this with baked potatoes/broccoli while I'm learning how to really do this... Would this work ok?

Does this sound like it might be my problem?! Are there any good, basic books y'all would recommend for someone like me to learn more about this and the best way to get started? Thanks so much for any help or thoughts... I'm terrified - but sorta feeling excited like maybe there IS a chance I will get my life back after all. I'd about given up hope.

- Jacki

Share this post

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

Before you start, can you get your doctor to run a full celiac blood test? If you want an official diagnosis, you must still be eating gluten for the results to be accurate. This includes the blood tests and an endoscopy to biopsy a portion of the small intestine (which has a name that i can't remember right now). There is also a genetic test that can be ran that can help with diagnosis.

At any rate, gluten free is somewhat difficult at first; no wheat, rye, or barely allowed. You will go through a withdrawl peroid (which can include but not limited to random mood swings, breaking down at the sight of gluten-y food, and cravings :lol: ). It is sometimes used in medications as a starch binder, so you would have to contact the medical company that produces it. Many kitchen wear things should be replaced such as the pasta strainer, wooden utencils, plastic utencils, scratched pans and tupperwear.

Oats are generelly crosscontaminated and should not be eaten without the "gluten free" label on the package (i believe its because they rotate the fields with wheat and oats). Toothpaste too may have it in it.

Share this post

Link to post
Share on other sites

Gosh, this sounds a lot like me, symptoms wise. I was told I was going to die if I didn't do something to lose the weight, get some nurishment in me (I couldn't eat) and reverse my fatty liver. I was terrified. Luckily I found a dietitian who knew what she was doing! She ran an MRT test and we got the results back. I stuck religiously to the diet. After 24 hours of not eating at all, I had my appetite back with a vengence. BUT I still had horrible abdominal pains and nausea and cold sweats, fatigue (like sleeping 20 hours a day! Not even kidding there), jelly legs, etc everytime I had a day that I ate spelt bread. So I stopped eating that. Then I read about gluten and celiac and I removed ALL gluten from my diet.

My next appointment, I told the dietitian about how I feel like a new person. My weight was dropping so fast that she threatened to put me in the hospital... she didn't, but I couldn't help it. I could out-eat my 2 teenage sons, which was a miracle since I couldn't eat before (Okay, I could eat about 500 calories a day before agony and fatigue set in) But I also told her about the spelt and gluten research. She strongly believes that I have celiac sprue. But since I was not willing to eat gluten before the gluten testing, we decided to let the testing go. She said that I could get a false negative if I avoid gluten. So I decided to just stick with gluten free. Every now and then I have an accidental cross contamination and I SUFFER because of it. I shake and sweat from the pain. So you can guess how often I eat out LOL. I MAKE SURE I make my own food or bring my food with me.

I am just over two years gluten-free and I am very happy with it. I feel like I am me! I am also VERY happy to be able to eat again. Sure, every now and then I miss my pasta or my grilled cheese sandwiches. But I don't miss them enough to go through the agony I went through before. That wasn't living. I have a new motto I repeat when the missing food gets bad...

I eat to live so I can live to eat.

  • Upvote 1

Share this post

Link to post
Share on other sites

Thanks for the replies... I'm going to call my dr tomorrow and ask her to add the full celiac panel to my labs I'm about to have done. Will this be enough info to get the right tests or do I need to ask for more specific ones?

Share this post

Link to post
Share on other sites

Welcome Jackibar and Dot!

Dot -- thank you for sharing your story - what a gift that you have found a path to a healthy life and that you are willing to share it :)

Jacki -- you should be specific that you would like a full celiac panel consisting of:

Total Serum IgA

tTG (Tissue Transglutaminase) - IgA and IgG

DGP (Deamidated Gliadin Peptide) - IgA and IgG


If nutrient testing is not already on your orders:

CBC - Complete Blood Count

CMP - Complete Metabolic Panel

Vitamins - All Bs, D, K

Minerals - Iron, Ferritin, Copper, Zinc

I think you said you might have had Thyroid tests, but make sure you have had more than TSH. The Thyroid Stimulating Hormone is actually a pituitary hormone. Because Celiac Disease and Autoimmune Thyroid Disease go hand and hand you need to get an accurate picture of thyroid function:

Free T3

Free T4

Thyroid Antibody testing

Hang in there...wait for the blood test results -- meanwhile read as much as you can to prepare to remove ALL gluten from your diet for at least three months (six would be better).

Ask as many questions as you'd like -- many of us have gone through years of mysterious illness with a multitude of "normal" blood work. Often it is a matter of not yet having the correct tests.

Share this post

Link to post
Share on other sites
Ads by Google:

I'm getting my labs done tomorrow! Just wondering if it would be a good idea to eat something with gluten right before going for the test? If so, what would be a good example?

Share this post

Link to post
Share on other sites

Have you been ingesting gluten regularly? One day of gluten loading won't effect your blood work. The tests measure antibodies created in response to gluten - this reaction doesn't happen in one day.

Share this post

Link to post
Share on other sites

Yes, I only found out yesterday that I may be dealing with gluten problems, so I haven't made any changes yet. Bread is my middle name :(

Just wondered if eating gluten right before going for the test would help trigger the antibodies to avoid a false negative...?

Share this post

Link to post
Share on other sites

As long as you have been eating gluten - at least a slice or two of glutenous bread per day or the equivalent - your test results should be as accurate as they are going to get.

You might want to make a gluten bucket list and eat some of those items until you find out your results/decide all testing is complete.

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


  • Forum Statistics

    • Total Topics
    • Total Posts
  • Member Statistics

    • Total Members
    • Most Online

    Newest Member
    Chris Smiles
  • Popular Now

  • Topics

  • Posts

    • Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain).  For me, personally, a gluten exposure can set me back three to six months.  My antibodies can last over a year.  And worse, I now developed autoimmune gastritis and hives.  Yikes!   I had  some hip and rib cage pain when I was first diagnosed.  Two months later I fractured some vertebrae.  I had been undiagnosed for so long, that I developed osteoporosis.  I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and  your previous experience.   I hope you feel better soon!  
    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.

      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
  • Upcoming Events