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      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.

Why Such Widely Different Reactions? Is This Common?
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11 posts in this topic

Just a bit of background... 1. I've been gluten-free since Nov 2011 2. My celiac panel prior to going gluten-free was neg so I've been labeled NCGI 3. I live in a non gluten-free household but have my own toaster, colander, labeled condiments, etc and dinner is always gluten-free for everyone So here's my issue. About a month ago in a moment of weakness and doubt I decided to eat 5 Wheat Thins curious to what my reaction would be. It was a late afternoon "snack" so my stomach was quite empty and I anticipated having an immediate reaction of my usual symptoms...massive bloating, nausea, heartburn. While I did think I bloated a bit, it wasn't distinct and no other symptoms came along, nor did I get a migraine or canker sore days later, which again I would've expected. I was surprised that it didn't amount to much. Fast forward to tonight when I had for dinner leftover gluten-free spaghetti with a bit of butter (my own, no cc), and a sprinkle of Parmesan. Within 30 I was so bloated that I thought I'd vomit. I took a phazyme and that helped greatly. I had the same reaction with that same batch of spaghetti a few days ago (the day it was first cooked). That time I had eaten it with red sauce and a side salad with ranch and I really wasn't certain the culprit. But given the same reaction tonight it must be that pasta. It's only corn flour and water. I eat corn and corn products regularly without issue. The only thing that I can think of as to why is that hubby cooked the pasta in a pot that he had used to cook Kraft Mac n cheese for the kids a few days prior. The pot was hand washed in hot soapy water. The pot is rather new, non stick, but has a glass lid (with a seem between the glass and the metal rim) so I'm aware that this could be a source of cc. So if I did get cc exposure in the spaghetti and therefore my reaction tonight and the other night was a glutening, the why such a non response to the Wheat Thins which would've been far more gluten? Is that possible? Actually while writing this I'm reminded that back in Feb I was accidentally glutened at a hotel restaurant. I had ordered a gluten-free flatbread pizza and I had already eaten 1/3-1/2 of it when the waitress came running out to tell me she made a mistake and gave me a regular version. Again, I would've expected the worst bloating, nausea, migraine, heartburn, canker sore, etc and yet only had a minor bloat. What gives? In both case of full on gluten consumption had I not known I was eating gluten I might not even noticed the bloating at all. Given my non diagnosis it just gives me a bit more doubt.

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I went through the same kind of experience.

2 months after going gluten free I had some Christmas fruit cake and 2 days later Wham with pain and fatigue.

But when I was gluten free the pain came back.

I'd get bloating from eating rice sometimes but not sure if it was the onions with the rice or dates I ate for dessert.

I also got bloating from milk.

 

So as you can see it's not only gluten that can be a problem.

I went back on a gluten challenge to get tested and I had procrastinated to do so for fear of the pain but it wasn't as bad as I had anticipated so that's why I'm getting tested again.

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I appreciate the response. Early on in this journey I definitely was aware that I could react to other things. But having been gluten-free for well over 1.5yr, I definitely know that I don't have any other food sensitivities. My reaction last night after the pasta was very distinct and very much in line with the experiences I had prior to being gluten-free. Had I reacted the same way to the Wheat Thins or the accidental pizza glutening (I'm still so mad at that hotel!), I wouldn't be overthinking this at all. But the somewhat lack of a response to the true glutening and yet bigger response to what could only be cross contamination just has me baffled.

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Is there anything else I should be considering? Or should I out doubt to rest and just accept that reactions can and will be all over the spectrum? Can anyone relate?

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The only thing I can come up with is that maybe you didn't get those immediate reactions but it could still be damaging your body. I know that if I eat gluten pizza or wheat thins ill be down for a week, I'm sorry I can't be more help with this. Did you have red sauce in the spaghetti leftovers? Maybe it's tomato some others do have issues with nightshades.

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No no red sauce. It was butter only.

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Do you think it could dairy? You had parm the first go around right? And butter the second....

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I had considered that but I'm a daily dairy user and don't seem to have issues otherwise. This morning I had cereal with skim milk w/out any GI symptoms. Most days I have some dairy in my diet...milk, ice cream, cheddar cheese, greek yogurt. 

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Definitely have me stumped! I know I'd be sick if I had wheat thins or pizza, and the spaghetti thing is beyond me unless it wasn't the spaghetti that made you sick.

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I think of you know you have a reaction to gluten (based on your experiences over 1 1/2 years ago), that you shouldn't question it now.

Many people have posted here saying they've been glutened, no immediate reaction....but odd things started happening they could recognize only retrospectively. Most say eventually they begin to exhibit a more immediate classic reaction, if gluten exposure continues.

The fact that you're reacting to random things that you didn't react to before is to me, is a symptom. Your body is protesting. Just because the reaction isn't what you expect (immediately following gluten) doesn't mean it isn't gluten related.

I had a rash that was present 24/7 for years - didn't rage or flare more the second I ate gluten. It just was....

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Hugs. We are just learning that we're going to have to start going gluten free, so I honestly know nothing about that aside from the reactions my youngest son is having.

 

That said....I'm kind of lactose intolerant. I can drink milk and eat cheese and yogurt but whatever the process is for making ice cream I get crazy, horrible stomach pains any time I eat it. I haven't tried making my own (some day I will get around to it!) and I have narrowed down the fact that it's more the dry milk solids that get me. I can't drink prepackaged hot chocolate without the same exact symptoms but I can drink homemade hot chocolate that doesn't have the dry milk in it. It's weird. And I will get around to making my own ice cream as I miss eating ice cream! :)

 

Good luck figuring this all out. We're pretty new to all this....and I'm just starting out with all the symptoms and knowing what to look out for. Such a challenge!

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    • Weird Reaction
      Thank  you Flowerqueen and Cristiana for your replies. I'm actually feeling much better today. I got my appetite back yesterday lunchtime (a few hours after I typed the original post) and managed to keep in/hold down some chicken and lettuce!!! I also had a "fat" coffee (as I call it) before work with MCT Oil and butter (your probably going "yuk" right now but it's really nice...really haha) and started feeling a bit better after that. The nausea went away almost immediately after that although just the thought of having all that fat nearly made me sick but I just wanted to get back to normal asap. I usually have a lot of fat in my diet anyway which is normal for me so the coffee choice isn't unusual. Plus it was also the third day which was when I started feeling better after the first time. I didn't eat til lunchtime and I was good and hungry by then so I knew I was coming out of it. That nausea and trembling feeling is something I don't want ever again. I think after the workout and tearing down muscle tissue (which is a form of stress) and then not being able to hold the nutrients in for repair affected my nervous system. My theory only but to me it makes sense. Although Vitargo also comes in flavors I always get the Natural / Unflavored one so the barley is the only ingredient. As for there being something wrong with that particular batch, well, you be on to something there. Also I'm not knocking the product because as I said, I have used it before and it did exactly what it was supposed to do. But, I will never have it again. Cristiana, my last blood test revealed I had slight anaemia which really surprised me with the amount of red meat I've eaten during my life and the anxiety thing is also new as I'm usually a happy, positive person. Life is good but after this recent reaction I think it is an indirect cause of the glutening. I'm also surprised at how sensitive I've become to it and how quickly. Also what is DX? I also follow a FODMAP eating plan (I can give you more info if you haven't heard of it) which also eliminates certain foods. It's a plan directed mostly at IBS but is well worth looking into if you are suffering any gut health, digestion issues or any ailment you may have which you can't get to the bottom of. Broccoli was one of the foods which I have cut back on and I've eaten HUGE amounts of broccoli so it is a superfood for some but apparently not for others. (I even think I read somewhere it has MSG naturally in it) It's hard to find any bad articles on broccoli so this also really surprised me. It also answered a few other questions I had. Many, many thanks again to you both for your replies. It actually settled me just reading them. I'm glad I found these forums so I don't think i'll be a stranger around here for long.   Richard
    • Confused
      Okay, I get that you are not going to follow the advice from some stranger on the internet, but please read the links that I gave you.  Your doctor is not following the standard level of care.  I am dead serious.  I have Kaiser.  My own GP doesn't have a clue about celiac disease, but my Kaiser GI does.  Please, I urge you to get properly diagnosed.  All celiac testing requires you to be on a gluten diet.  If you go gluten free even for two weeks (it will take time to get the referral and appointment), it will mess up the tests.  Your GI will put you back on a gluten diet (called a gluten challenge) for 8 to 12 weeks.    Chances are (almost 100%) you will feel more miserable!  That will just delay your diagnosis.   Symptoms not bad you say?  I had pretty severe anemia, but no tummy issues.  Two months after my diagnosis, I fractured my back DOING NOTHING!  Yep, I have osteoporosis from undiagnosed celiac disease and I am an athlete!   Please take this seriously!    
    • Silent Celiac or Non-digestive symptoms
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    • Confused
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    • Could this possibly be related to celiac or a gluten intolerance?
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