• 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

Do You React To Different Gluten Sources Differently?

Rate this topic

Recommended Posts

Hi everyone,

I have been suffering from sinusitis for years off and on, but this last time has been particularly maddening since my head will not completely drain like it would before. My head has not been clear like before in over two years this time. I have tried everything and still keep coming back to food intolerance and possible additional problems with candida due to previous antibiotic use. Not to be gross, but I have strings of stuff that is just now draining after trying to reduce gluten and taking probiotics, but I still can't get 'back to normal'. I went to western-minded docs (incl. ENT) and they said they couldn't find anything except a maxillary cyst (which they said couldn't cause problems) but 'they love to do surgery' and if things didn't improve I could do that. Um.....no thanks. Anyway, my family thinks I am insane because I am trying to avoid gluten most of the time (and sometimes dairy as well) and they even say things like 'well, I LOVE gluten - I will eat mine with EXTRA gluten'. Like I said, they think I'm nuts.

Sometimes I do cave in on Friday nights when they order pizza (a nationwide chain). I just get so discouraged because I don't have the money to test at Enterolab yet, and I get tired of trying to fight upstream against everything sometimes. I know I feel bad after eating pizza but I have noticed a weird thing going on. If I eat the hash rounds at Burger King (which I just now found out have wheat - I thought they were gluten-free in a dedicated fryer like the fries which don't really bother me) I get TERRIBLE leg cramps (like charlie horses). Only SOMETIMES do I get these same weird leg cramps when I eat pizza. One time I made a bunch of muffins and ate 3 before going to bed, and I woke up screaming in the middle of the night with the worst and longest-lasting charlie horse I have ever had in my life.

My questions are:

Why is it that hash rounds/potato cakes and muffins can cause pain but not always pizza? It seems to me the pizza crust would have WAY more gluten than what is on the hash rounds (although there is the cc issue).

Do any of you only react SOMETIMES to gluten and only to particular sources?

Is it possible I have some other weird intolerance going on like soy instead, or even in addition to gluten problems (I do suspect dairy)?


Share this post

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

Is it possible I have some other weird intolerance going on like soy instead, or even in addition to gluten problems (I do suspect dairy)?

It's quite possible you have a dairy intolerance. Dairy makes my nose run like mad. When I eliminated it in a trial a few years ago, my constant nasal drip disappeared within a day. Eating/drinking dairy afterward had a very noticeable reaction within a few hours. So yes, diary can cause sinusitis or make nasal drip a lot worse. Pity I can't give it up, I just put up with the nose running :) If I consistently eat the same amount of dairy each day, I find the symptoms do get milder, as if your body gets used to it, but it might not be worth it for you.

Also look into histamine intolerance - do you get migraines or headaches, jaw pain, sinus pain after eating chocolate, cheese, avocados or wine? With me if I eat a lot of chocolate, like an entire slab, I'll guaranteed be off sick the next day or two with a sinus infection/nasty cold! Somehow the chocolate releases a ton of histamine in my body, or possibly drives down my immune system so that I'm susceptible to getting sick. Chocolate in small amounts seems to be fine :)

I found these connections by keeping a food journal daily, keeping track of food eaten and symptoms. The chocolate/getting sick connection came up very quickly. I also found out I had a severe GI intolerance to chicken, so it was *definitely* worth a few minutes a day doing it :)

As for your gluten questions - I never saw any link between my gluten consumption and symptoms in my food journal way back. My other diary/chocolate symptoms are clear as *night* and *day*, I swear! :) I think the only way to know for sure is to keep a strict gluten-free diet for at least a month and see how you feel. It can take a while to get rid of all the gluten poison running around your body, and your gut takes time to heal, if it's damaged.

Also, it's only when I went off gluten completely that I really started reacting badly to small amounts of gluten. There's a "masking" effect in place when you're eating wheat all the time, similar to the dairy thing I think, where you don't feel so bad, but take it away and you really get sensitive to it.

I sympathize with the family comments - just ignore them and do what's right for you. Celiac disease is hereditary, so chances are they're also suffering and you've found the key to make you feel better! I think people feel threatened by others with "special" diets, they want you to eat what they're eating to justify their diet, pigging out on bread etc. They can't understand that it's not a "fad", we're really sick and desperate to try anything to feel better. :/

By the way, if you haven't already, I'd highly recommend seeing a GP and getting a blood test for celiac done before going gluten-free (Just make sure they test IgA, not IgE levels!) Don't take no for an answer! If you are diagnostically celiac (and it can happen without any GI problems at all!), then you've got something to justify your diet to your family, and they may need to go for testing as well!

Hope this long answer helps, and good luck with finding the cause of your issues!

Share this post

Link to post
Share on other sites

I think it might be the fact that potatoes are a nightshade. I not only had terrible leg pains from potatoes, but I literally couldn't walk for about two weeks after eating them. The alkaloids in nightshades are actually toxic to everyone, but most people have a high enough tolerance so as to not notice any effect. But with a leaky gut (which Celiac tends to cause), those toxins can more easily pass into the bloodstream. Candida overgrowth can also cause or accompany a leaky gut.

Try taro root instead of potatoes. They are white inside, and can be fried, baked, mashed, boiled, etc just like potatoes. I've even made chips out of them. The flavor is very similar too, though I actually prefer the taste of taro over potato. It's slightly sweeter, with a hint of what many describe as tasting like water chestnut.

Share this post

Link to post
Share on other sites

I and someone else also noticed more reactions to small gluten sources than to huge gluten sources. Happens sometimes.

Share this post

Link to post
Share on other sites

I had a problen with my neck vertabrae being slightly out of line and after seeing a chiropractor learned to re-align the vertabrae and when I did that my sinuses would drain. From another chiro. - he said that whenever we are exposed to something we react to that our head instinctively jerks back and this may cause a misalingment. I also feel better, not so fog headed and the ringing in my ears is much less, I think it restores good circulation to the brain.

One reason for leg cramps and stiff muscles is that your body may be too acid rather than the normal slightly alkaline. You can get pH strips and test the saliva first thing in the morning before brushing teeth or putting anything in your mouth and if it is acid you can correct it. I read up on this and I find if I eat more vegetables than carbs amd high protein foods such as meat it's unusual for me to have leg cramps and still muscles. Search for 'acid forming foods'. I always try to add enough alkaline forming food anytime I eat acid forming foods. 3 muffins with nothing to balance them would give me cramps.

Share this post

Link to post
Share on other sites
Ads by Google:

Wow! Thank you so much to all of you for your responses so far - these are great ideas!

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
  • Popular Now

  • Topics

  • Posts

    • So my tTG-IgA result came back negative. Doc did not do the total IgA so I could be in the 2% false negative. However my ferritin continues to fall (at 25 now so getting borderline to need another iron infusion, 6 months ago it was 50) and reflux was keeping me up at night so after the blood test I went on a gluten free and low FODMAP diet. 6 days later my reflux is gone! I had no idea it could work that quickly. I still feel like there is a lump in my esophagus and have a bit of difficulty swallowing (think I still have irritation in that area) but no more acid and regurgitation! Also have not had a single episode of gas or urgency or days with 8 BMs.  It has only been 6 days so maybe I am just having a good spell but am going to continue gluten free and low FODMAP for a month and then see if there are any FODMAP foods I can eat (but not gluten unless my doc decides I should have a biopsy) (I miss pears and apples). I guess the real test is to see if my ferritin levels start to go up-testing again in 6 months. The diet is very restrictive but worth it if it gets rid of the reflux and other symptoms. BTW post-menopausal (and before that I had an IUD for 10 years TMI) so no periods to blame for chronic microcytic/hypochromic anemia. Doc says "that's normal for you, you just don't absorb iron very well".
    • Did you know that there are so many issues and questions surrounding celiac disease that even doctors who specialize in it find that the scientific data changes every six months, and this includes research data, new diagnostic and testing recommendations, and its connections to other diseases and conditions. In fact, many of us who think we have "arrived" and know it all might actually need a refresher course on the disease. View the full article
    • Apologies for my over-reaction.  As the shampoo exposure was only for a couple week or so, I doubt any lab tests would have indicated exposure. Unfortunately, since I didn't have the antibodies, I can only rely on my symptoms to tell me if I've been exposed. I'm fortunate enough that eliminating gluten (and dairy) from my diet completely fixed my problems. I have had no lingering systems, and now that I have been gluten free for a while, when I do get gluten I have a very clear reaction (and a distinct reaction to dairy) that follows a fairly predictable timeline. This has accidentally been tested a couple of times. For example, early on before I was better at reading labels I grabbed some cookies at the grocery store that I thought were gluten free (the company produces both a normal and gluten-free version, and this was before I learned to avoid shared facilities). I had grabbed the wrong bag but I didn't figure it out until about a week of feeling crappy had passed and I went searching for a culprit. Things like this have happened a couple of times, where I accidentally did a blinded experiment on myself. The symptoms are consistent, and resolve once I remove the offending item. So when I recognized my symptoms as the result of gluten, I went looking for a culprit and I found the shampoo and conditioner. I removed them and then I got better.  My problems are largely systemic. I wouldn't be surprised if I don't actually have celiac but some other immune mediated reaction that hasn't been defined, but calling it celiac is the best way to get people to take my needs seriously (which I'm sure you understand). Unfortunately, my problems don't seem to fit into any particular diagnostic bucket, so I've learned not to rely on the official medical terms and just go with what works. I'm lucky to have had doctors who think the same way, else they might have told me that I didn't need to go gluten free once I failed to show clear-cut celiac. Maybe I'm pre-celiac, maybe it's the much maligned NCGS, or it's all related to leaky gut (I am eagerly awaiting the FDA approval of larazotide so that I can get a doctor to give me some, I think it might do me a lot of good). All I know is that when I went gluten and dairy free it literally changed my life.  In general it seems that gluten exposure causes a generalized inflammatory response. I get some inflammation in my gut that manifests as reflux, acid indigestion (what I call "fake hunger"), and a little bit of urgency and unpredictability with regards to bathroom needs, but if that were the only problem, I think I could live with it. I also get headaches, brain fog, my depression/anxiety gets triggered to a scary degree, arthritis, muscle aches, and then, the clincher, muscles spasms in my upper back and neck that have been known to lay me out for a couple of days while I wait for the muscle relaxants to help me heal. The muscle spasms, arthritis and brain fog are the most recognizable and are usually what cue me in that I got glutened, especially the spasms.  Again, sorry for being oversensitive. I should have known better, since this is such a supportive community.  
    • I appreciate your point. However, constancy of my celiac symptoms indicates that I have had the disease for at least three years - while I have never experienced any food allergies in that time. Although I will keep an eye on any emerging allergies, I believe my current fatigue is due to nutritional deficiency, because the only exogenous change in my life style has been the transition to gluten free diet.   Yes, I certainly need to keep a food diary. Thanks again for the advice.
    • In many cases no.....I consume heavy magnesium foods like pumpkin seeds, cocoa nibs etc....and still need 2-3x the dose of magnesium recommendations. Going on more of what poster boy said. You dose magnesium to tolerance with citrate like Natural Vitality Calm you start off small partial doses and slow ramp up....it can hit you hard causing gas and D if you go to quick into it. You dose citrate to tolerance meaning you slowly up your dose til you get loose stools...then back down a bit. You should have vivid dreams with a good dosing....also if it becomes to harsh or you can not handle citrate there is Doctors Best Glycinate...it does not have the gut effects at all...but the dreams and how much it makes you relax is more more felt.   ...with this disease you can have a food intolerance or allergy crop up out of the blue....like no where. You have a autoimmune disease....celiac it effects your immune system and can make it really wonky. Like it seems to always be on guard like a sleep deprived sentry on stim packs...jumps at everything and shoots it. If you get sick, eat something odd or harsh you system might red flag it as a issue for awhile and go bonkers....keep a food diary and try a food rotation in the mean time...OH as a example to this, I was fine with chia seeds last week...I got a cold over the weekend....same bag, same brand same way....withing 30mins I now puke if I eat them...new intolerance.....I also am finding jalapenos/paprika making it sleepy tired....so I am removing them both for a few months from my diet and changing to other sources for fats/fiber and vitamin A/C til I get over that issue.....these things just happen. https://www.mindbodygreen.com/articles/are-food-sensitivities-for-life
  • Upcoming Events