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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.

Two Questions
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6 posts in this topic

Two questions:

1. Is it possible that (inadvertantly) eating (minute quanities) of gluten can cause migraine-like headaches and ZERO energy? I'm thinking I need to go see a doctor, because after years of no headaches at all and an abundance of energy, since going gluten-free, I've been getting terrible headaches, and getting laid out for days with no energy at all. But it ALWAYS happens after eating something that I didn't prepare myself. I'm being careful. Or rather, I'm trying to be careful, but I think there must be gluten in things that I think wouldn't have gluten, like sausages, or.....I don't know. I can't even think right now.

2. If, after going gluten free (it's been nine months for me), what does it MEAN that I seem to be quite sensitive to even minute amounts of gluten? If years of eating gluten only caused tolerable (though persistent) problems, now that I've eliminated it, after a period of several months of feelings gloriously well, now I seem to have reactions to all sorts of things. Isn't that worse for my body than what was going on before? I mean, if my system was so overwhelmed with gluten that it couldn't react properly, now that it's reacting, isn't that doing even MORE damage?

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I've been gluten-free for ten years now & I find I'm so much more sensitive to gluten now than the beginning....You are still healing being gluten-free for only 9 months. It can take several years for some people to heal.... You also need to become more aware of what you are eating. Become a label reader, hidden gluten is in loads of things....

example: some restaurants put pancake flour in scrambled eggs to make them more fluffy, who would ever guess that...

Plus have you had a good medical work-up done lately? B 12, Vit D, glucose, thyroid panel, metabolic panel & so on....

Another thought is are you reacting to other foods that maybe don't have gluten ie: milk/dairy, soy, corn.....

Hope you feel better soon....

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I didn't realize my migraines were caused by gluten until I went gluten-free. I used to get them for about 2 weeks of the month and now I'm down to just a few days. The two times that I did get glutened (in the first month or so) I ended up with a migraine that lasted a few days and I was tired, so I know for me that there is a definite link.

And yeah, many sausages have gluten filler in them. Not all, but many. :( I hope you are feeling better soon.

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I had some fatigue and lack of energy. I found out I had had both corn and wheat. Things I was eating were cross contaminated.

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Is it possible that (inadvertantly) eating (minute quanities) of gluten can cause migraine-like headaches and ZERO energy?

I live in a household of 5 and until I separated all gluten stuff - bought an island on wheels for their bread etc. and designated the rest of the kitchen gluten free - and also bought all my own bakeware, strainers, measuring cups, etc. I was sorta ill all the time. I had headaches & joint aches, not necessarily the big stomach issues I get if I ate gluten. One day I made gluten cookies and got flour in the air and my sinuses went poof! and I had a mega headache for half an hour - felt woozy. It was an eye opener ! And weird.... I think little amount accumulate and make you feel ill, then make you feel like a big gluten attack.

Yeah, & brain fog !

If, after going gluten free (it's been nine months for me), what does it MEAN that I seem to be quite sensitive to even minute amounts of gluten?

I have been gluten-free for 10 years & I am very sensitive. I no longer handle gluten at all- my kids do the baking and clean up (and not on my counters!). A tiny amount makes me miserable and out of it, a small amount makes me sick.

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I also get a migraine and never connected the two until about 2 months ago and everytime I review what I've had to eat it is from the potential of CC.

And yes, I will react to a crumb now. I even reacted very nastily to driving thru a barley field dust cloud during harvesting, I could taste it in my mouth.

In a way, I'm kinda thankful for the migraine because it let's me know that I have to stay 100% diligent with my food choices, like shared lines in a facility.

Living and learning.

Colleen

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    • I am very interested in this too. My daughter tested negative for celiac, but has terrible primarily neurological symptoms. Because she tested positive for SIBO at the time and was having some GI symptoms, I was told it was just a Fodmap issue.  I knew better and we have been gluten free for 2 years.  Fast forward to this February. She had a SIBO recurrence that I treated at home with diet and herbal antibiotics because I couldn't get the insurance referral. She was doing great. Then stupid me brought in gluten containing chick feed for the new baby chicks we got.   Feed dust everywhere. Total mess.  Really, no GI symptoms (she was SIBO free by then)...but the neurological symptoms! my daughter couldn't walk for three days. Burning down one leg, nerve pain in the foot. Also heaviness of limbs, headache and fatigue. Better after three days. But unfortunately she had a TINY gluten exposure at that three day mark and had another severe reaction: loss of balance, loss of feeling in her back and arms, couldn't see for a few seconds, and three days of hand numbness, fatigue, concentration problems.  Well, I actually contacted Dr. Hadjivassilou by email and he confirmed that the symptoms are consistent with gluten ataxia but any testing would require a gluten challenge. Even with these exposures, antibodies would not be high enough.  His suggestion was maintain vigilance gluten free.  I just saw my daughter's GI at U of C and she really only recognizes celiac disease and neurological complications of that. But my impression is that gluten ataxia is another branch in the autoimmune side of things (with celiac and DH being the other two).   At this point, I know a diagnosis is important. But I don't know how to get there. We homeschool right now so I can give her time to heal when she is accidentally glutened, I can keep my home safe for her (ugh, that I didn't think of the chicken feed!)  But at some point, she is going to be in college, needing to take exams, and totally incapacitated because of an exposure.  And doctors state side that are worth seeing?  Who is looking at gluten ataxia in the US?
    • Caro..............monitoring only the TSH to gauge thyroid function is what endo's do who don' t do a good job of managing thyroid disease.  They should do the full panel and check the actual thyroid hormone numbers.........T3 and T4. The importance of the TSH comes second to hormone levels. In order to track how severely the thyroid is under attack, you need to track antibody levels.......not the TSH. I did not stay with endocrinologists because I found they did not do a very good job and found much greater help and results with a functional medicine MD.  You should not have a goiter if your thyroid is functioning well and your TSH is "normal".  Maybe they should do a full panel? Going gluten free can have a profound affect for the better on thyroid function and that is something that is becoming more and more accepted today.  Ask most people with Celiac and thyroid disease and they will tell you that. My thyroid never functioned well or was under control under after I discovered I had Celiac and went gluten free.  It was the only way I got my antibody numbers back down close to normal and they were around 1200 when it was diagnosed with Celiac.  I was diagnosed with Hashi's long before the Celiac diagnosis.  I am not sure Vitamin D has anything to do with thyroid antibodies but who knows?  Maybe it does have an affect for the better. It is really hard to get Vitmain D levels up, depending on where you live. Mine are going up, slowly, even after 12 years gluten-free but I live in the Northeast in the US and we don't have sun levels like they do in the South.  I take 5,000 IU daily and that is a safe level to take, believe it or not.  I get no sun on my job so the large dose it is! Having Celiac Disease should not stop you from being able to travel, especially S. America. I travel, although I do agree that some countries might be very difficult to be gluten free in. You can be a foodie and travel with Celiac so no worries on that front. You may not be able to sample from someone else's plate, unless they are eating gluten-free too but I have had awesome experiences with food when traveling so you can too!
    • I don't know what you drank or where.... so here are a few thoughts. - sure, a dive bar might have dirty glasses and serve a cocktail in a beer glass?  But a nice reminder place, with a dishwasher, should be fine.  If it's a sketchy place, Stick to wine, then it's served in wine glasses that aren't used for beer or bottled ciders in the bottle.   - ciders on tap might, just a slight chance, have an issue.  Because of beer on tap, mixed up lines, etc. - you may have a problem with alcohol - you may have issues with The  high sugar content of the drink.  I know I have similar issues if I drink serveral ciders of extra sugary brands - are you positive it was a gluten-free drink?  Not this " redds Apple" pretending to be a cider - it's beer with apple flavor.  Or one of those " gluten removed " beers?  
    • Hi Stephanie, I'm also from the UK, I've found this site more helpful than anything we have!  As already mentioned above, in my experience it could depend on what and where you were drinking. Gluten free food and drink isn't always (not usually) 100% gluten free as you may know, maybe you have become more sensitive to even a trace of gluten that is probably in gluten free food/drink. Is it possible you have a problem with corn, particularly high fructose corn syrup that is in a lot of alcoholic drinks? This was a big problem for me and the only alcoholic drinks I can tolerate are William Chase vodka and gin. I contacted the company last year and all their drinks are 100% gluten and corn free, made the old fashioned way with no additives, so maybe try their products if you like the occasional drink and see how you get on. If you drink out, not many pubs sell their products but I know Wetherspoons do and smaller wine bars may too. l was never a spirit drinker but I must say their products are absolutely lovely! Very easy on a compromised gut too considering it's alcohol. I second the suggestion on seeing a natural health practitioner. I've recently started seeing a medical herbalist, as I've got nowhere with my now many food intolerances since going gluten free last year and I've noticed a difference in my health already. 
    • Sorry for the very late reply and thanks for the replies, I didn't get a notification of any. In case anyone else comes across this and has been wondering the same as I was, I did try a vegetable broth and I did react to it in the same way as if I'd eaten the vegetables.  As for the candida, I've been using coconut oil and am seeing a medical herbalist for this and leaky gut. It's only been a few weeks but I've noticed an improvement all round.
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