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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 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
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Em314

In Pain... Again

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I don't even know wtf is doing it this time, or if it's gluten or not (I have yet to have a confirmed glutening, so I don't actually know how to tell that from other stomach upset). Pain and bloating, but no brain fog or severe exhaustion- though, I do feel more tired (but the weather was also crappy the last couple of days, and I got to bed later than usual the last couple of days). The last couple of days I've had stomach pain towards the end of the work day. There's no direct source of gluten than I can think of. Only thing that I ate extra that was especially different was jolly time microwave popcorn, which is supposed to be gluten free, and I had a little bag of yestrday afternoon. I have been cutting back on evening snacking (which was largely carb-y stuff like chex and potatoes).

Theories:

-jollytime popcorn isn't gluten-free and the internet lies to me

-the popcorn goes VERY bad after it's "best by" date (which, admittedly, was apparently October 2012, which I did not realize at the time)

-The microwave cc's the popcorn even though it was a sealed bag on top of a paper towel (it's a shared microwave at my office, so there's definitely been gluten in it

-there hasn't been as much extra food in me as usual the last couple of days to absorb acid (I've identified acidic foods as a definite trigger for stomach pain) (support for this theory includes the fact that my stomach hurts more at the end of the day, when I've gone through most of my food already, and that the pain is sometimes alleviated by eating) (I should clarify here I am making sure I'm eating adequately and regularly/it's not something obvious like there being no food in me)

-I have had even more fiber than usual- but only by a little- and that's doing it (I usually do have a pretty darn high fiber diet as I like raw fruits and veggies)

-something about being at work (psychologically? ergonomically?) makes my stomach hurt

Help? Is there a way to reduce stomach acidity (other than pills like PPIs, which I do not want to take)?

This is so, SO freaking discouraging and depressing. I've been gluten-free almost 2 months, and have been pretty gosh darned diligent about it; this pain shouldn't be happening any more, should it?

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Have you tried Tums or Pepto Bismul?

You are not very far into the diet, are you? (I see you joined in November) so it is still early days in healing. Maybe avoid the microwave at work for a while and see if it helps?? Although if your food is covered it's hard to conceive of that being a problem. Put the bag on a paper towel, cover with a paper towel? Maybe eliminate the hard-to-digest raw veggies for a while. Try some digestive enzymes to help digest your food.

Apart from adjustments like this, it is going to take time and patience to heal. For some people healing is measured in years rather than months. NOT to say you will feel like this for years, but it is a process and it takes as long as it takes.

I hope you are feeling better soon.

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Have you tried Tums or Pepto Bismul?

You are not very far into the diet, are you? (I see you joined in November) so it is still early days in healing. Maybe avoid the microwave at work for a while and see if it helps?? Although if your food is covered it's hard to conceive of that being a problem. Put the bag on a paper towel, cover with a paper towel? Maybe eliminate the hard-to-digest raw veggies for a while. Try some digestive enzymes to help digest your food.

Apart from adjustments like this, it is going to take time and patience to heal. For some people healing is measured in years rather than months. NOT to say you will feel like this for years, but it is a process and it takes as long as it takes.

I hope you are feeling better soon.

I so often see people on here saying the pain and bloating went away almost immediately for them that I'm starting to really worry that I'm screwing up and not knowing I'm doing it, though that seems next to impossible. I did get endoscopy results as having "moderate" villious atrophy (they didn't put a Marsh stage to it, but I'm guessing that means 3a or 3b), so there's a lot of healing yet to happen. I've been gluten-free since December 1.

I see my GI doctor in March, but I don't want to keep damaging myself between now and then if that's actually what I'm doing. If I thought it was just an upset stomach or just me still healing and being more sensitive because there's been so much damage done and it would get better with time, it wouldn't be bothering me much at all; it's the not knowing and the worrying that's making me batty.

Also, yes, some tums, but it's not just today I'm worried about, it's about me making ongoing mistakes if I don't figure this out.

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Okay, while I was healing (and even today) I always need food on my stomach, otherwise it feels like it tries to digest itself :wacko: So small meals often.

Cut out the raw veggies for now; they are the hardest things to digest.

Be super diligent about handwashing. If you are getting something at work it could be anything from shared keyboard, shared phone, gluten all over the kitchen. So wash hands before touching food (and no, the hand sanitizers do not kill gluten, only germs :) )

Do you have a hand lotion at work that contains gluten? (Goes with all that handwashing :D )

On the same note, have you eliminated gluten from all personal care products at home, like shampoo which can get in your mouth? Depending on your reaction time, this could be hitting you at work.

Do you have a pet that eats gluten?

Sometimes we think we have too much acid when we don't actually have enough in our stomachs. You could try supplementing with Betaine HCl and see if that made it better or worse.

Take a good quality probiotic.

Take a digestive enzyme with every meal.

Don't try these all at once :ph34r: Try them serially so you will know what helps and what hinders.

Happy sleuthing :D

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Already switched the kitty to gluten-free food. Will work on the rest. The veggies are not raw (they're steamed)- it's the fruit that's raw, but that isn't as variable and I'm not as worried about it. I'm thinking cutting back on the veggies, and eating a little more at work, and seeing how that goes. Next step may be looking into a probiotic other than just yogurt (which I eat daily, and which I don't suspect is causing problems because it's a constant and because I have not noticed any problems linked to it thus far). I do the small/frequent meal thing already, but work semi-long days, and my sense of hunger is, I suspect, kinda distorted, and will be for some time (years of malabsorption plus bloating- I'm used to feeling overly full not not adequately nourished simultaneously). So, some days it's easier to space the little meals out than others. Today I had a little more trouble with that than usual.

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Yes, I found just yogurt was not enough. I actually, in the end, took a heavy duty probiotic (VSL#3, ordered online) which has something like 40 billion of the good guys :blink: (figured that should be enough, and it was), in addition to daily yogurt. I still take some probiotics, especially if anything seems a bit off, but always the yogurt.

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Last week, I had my first fully pain-free week in what was definitely months and maybe even years. So, for that, hooray.

I'm increasingly convinced I have issues with acid reflux, too, though, pure and simple. For example, had some pain last night, and the only two non-typical foods I had were peanut M&Ms (prepackaged, I have no issues that I have noticed with panuts and I don't *think* chocolate triggers me) and a singular clementine. Unless I somehow touched the hands of someone who had touched something with gluten in it and that got onto the clementine that way, but logistically/timelinewise that doesn't really make sense for a couple of reasons unless I'm waaaaaaaay more sensitive than I've been anticipating (if it's that easy for me to get glutened, I should probably also be getitng glutened constantly just from interacting with the world in general). For right now, I'm assuming the clementine was too high a concentration of acidity, because that's what fits the pattern best.

I'm hoping that with time and healing my insides will get a little less sensitive, but even if they don't, it's much less upsetting when I understand what's happening and why (or, at least, when I feel like I understand it).

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Hey, Em... I have the same issue with popcorn. Instead of eating an entire bag, I eat about half. I also pay attention to not eat it late in the evening. It just doesn't digest easily for me. That's with no gluten involved. I did have some popcorn that contained gluten inadvertantly and I knew it right away because I became quite noisy on my sofa!

I try to stay away oranges, bananas, and the like late in the evening. However, I have no issues with strawberries and raspberries with yogurt in the evening. I think I am on the acidic side as well and for some reason, timing and quantity seem to help.

I was diagnosed around the same time as you but I have total villous flattening. So, I'm definitely still trying to shake some of these symptoms. In the meanwhile, as long as God keeps giving me another day, I'm going to live it!

Good luck!

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eers- I've noticed the timing thing too! Not just avoiding eating before bed; time of day during the day effects sytmpoms during the day on the same day (non-gluten foods, which are from what I can tell, primarily high acidity foods). I've considered posting about it/asking about it but haven't gotten around to it yet. I seem more able to handle more acidic foods earlier in the day, as well. I wish I knew why, but knowing is better than not knowing.

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Ok, I think it makes sense to tell you about my experience with H.Pylori and ulcers. That may not be your issue but more info is better right?

First off, stomach pain from not eating is not a normal thing. Your stomach shouldn't start hurting just because you haven't eaten in a few hours. I have had that happen, stomach pain after not eating for a while, but it was from an ulcer. Ulcers caused by H. Pylori are not able to thrive in a high acid environment. The bacteria digs itself into the stomach lining and stops the production of stomach acid in that area. Then it reproduces. It likes low stomach acid. When you eat you fill your tummy up with all kinds of healthy nutritious food. The stomach acid increases and the level rises also and floods the bacteria infected area. The acid increases to digest the food and kicks the bacteria's butt for a while. The food digests and then leaves the stomach. The level of liquid in the stomach decreases (less full) and the bacteria get all happy again because the liquid (acid) is lower than the bacteria colony. Happy bacteria like to dig and replicate. So pain.

So, how to treat H.Pylori? Betaine HCL, DGL, and mastic gum. just some things to try, in case it is H. Pylori.

OK, being very hungry for a while is normal after going gluten-free. That does happen. I think it is the body trying to stock up on nutrients to help it heal.

My gut pain took around 9 months to back off. But that was lower down and to the left of the belly button area, not stomach.

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Ok, I think it makes sense to tell you about my experience with H.Pylori and ulcers. That may not be your issue but more info is better right?

First off, stomach pain from not eating is not a normal thing. Your stomach shouldn't start hurting just because you haven't eaten in a few hours. I have had that happen, stomach pain after not eating for a while, but it was from an ulcer. Ulcers caused by H. Pylori are not able to thrive in a high acid environment. The bacteria digs itself into the stomach lining and stops the production of stomach acid in that area. Then it reproduces. It likes low stomach acid. When you eat you fill your tummy up with all kinds of healthy nutritious food. The stomach acid increases and the level rises also and floods the bacteria infected area. The acid increases to digest the food and kicks the bacteria's butt for a while. The food digests and then leaves the stomach. The level of liquid in the stomach decreases (less full) and the bacteria get all happy again because the liquid (acid) is lower than the bacteria colony. Happy bacteria like to dig and replicate. So pain.

So, how to treat H.Pylori? Betaine HCL, DGL, and mastic gum. just some things to try, in case it is H. Pylori.

OK, being very hungry for a while is normal after going gluten-free. That does happen. I think it is the body trying to stock up on nutrients to help it heal.

My gut pain took around 9 months to back off. But that was lower down and to the left of the belly button area, not stomach.

Thank you for the info.  I am going to proceed for now on the cautiously optimistic assumption that I'm just more sensitive right now because I'm healing, and am still discovering what foods I'm sensitive to, but I will speak with my GI doc about the possibility of ulcer as a co occuring condition, especially if it doesn't continue to improve.  I have been noticing marked improvement in symptom control for the last couple of weeks- nowhewre near perfection, but, improvement- which is a huuuuuuuuge relief.

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