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birdie22

On A Wild Goose Chase And Ready To Give Up

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I feel like I'm on a wild goose chase. I've had symptoms of bloating, heartburn, nausea, headaches, canker sores, and exhaustion for 14mo now. I've ruled out birth control, all my blood work is normal (including celiac panel, vitamins, thyroid, iron, CA 125, etc). I've had an upper GI and an abdominal CT. All normal. I've done months of prilosec which helped the heartburn but not the other things. I've been gluten-free for about 4 weeks. I thought I was making progress...less headaches, improving heartburn, etc. This week I'm back to feeling like junk...bloating after seemingly benign meals, 2 days of utter exhaustion. And all along my symptoms have been sporadic like that and mostly occurring at certain times during my monthly cycle, just as they are this week.

I'm frustrated. I feel like I'm just grasping at straws trying to find the cause/solution and wasting time, lots of time, chasing something that might not even be my issue. I keep wondering how much longer I keep at this before moving on. I have a follow up with my PCP tomorrow and I'm just not even sure where to go with this next.

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Don't give up!!!!

Something else is bugging you! Have you been to an allergist?

And have you complete cut out the common problem food intolerances associated with celiac disease? (Like dairy, soy, corn, nightshades?)

If you're feeling better that you were 4 weeks ago, that's something to celebrate. Unfortunately healing takes quite awhile if you have food intolerances. Try to give it some time and see what happens.

Good luck to you.

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Yes, four weeks is waaay too early to give up. Healing is a process, and depending on the damage healing from gluten can take 1-2 years to fully recover. Some people continue to see improvement for longer than that. I agree with Marilyn that it is at about four weeks, after the body has recoered from the gluten onslaught that it starts complaining about some of the other things it doesn't like. You have probably seen mention here many times of food and symptom diaries. This is about the time to start one and experiment with eliminating the other allergens and then adding them back in once you have stabilized. Eat pure unprocessed whole foods so that you know what is in your food. :)

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Yes, I have to agree with the others, who often offer great advise.

Please begin a food diary with everything that passes by your mouth and how you prepare your foods.

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Thanks for the encouragement. I wish this process was easier. It's just do easy to doubt what I'm doing w/out a diagnosis. I have been eating simple whole foods but have not eliminated anything other than gluten. I've been keeping a food diary but have yet to find a trigger. I'll keep at it for a few more months I guess.

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Start off with dairy first, because that's the obvious one. If that helps, you can experiment further and see if it is lactose and/or casein by trying hard cheese. If that doesn't help then the easiest thing is to dump the whole bunch of allergens, corn, soy, eggs, nuts, the whole top eight, and then add them back in one every four days or so. In about three weeks you will know about them all.

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Have you gone through your kitchen and eliminated sources of cross contamination? You need your own toaster, pasta strainer and cutting boards waffle iron and wooden spoons if you use them. If you have any scratched nonstick cookware or plastic storage containers they probably should be replaced. If you still have regular flour/baking mixes, I would get rid of them or donate. THe flour can stay airborn for up to 24 hrs. Not only could you breath it in and swallow some, but it will settle back down on your counters. Replace any baking items, herbs and spices that may have cross contamination. Don't share any items in the fridge, ie. condiments, butter etc that you dipped into prior to gluten free. If they are squeeze containers your probably fine as long as they are gluten free, but if not let the gluten eaters finish them up. I have a shared house with only one person eating gluten in it. Three of us are gluen free. My husband does have his cereal, bread and crackers but that is mostly it. I bake everything gluten free and if he wants something I won't or can't make he goes to the bakery. I prepare all shared meals gluten free. Hubby eats what he wants for breakfast(sometimes gluten free) and he makes a sandwich etc. for lunch when he comes home from work. We share all lunch meats, cheese and condiments by either having squeeze bottles or if not he takes necessary precautions as not to contaminate it.

It can be frustrating at the beginning, but don't give up. As some of the other posters suggested you might also be having a problem with other foods. Hang in there!

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My house is not gluten free, DH and two DDs are gluten eaters. It's entirely possible there's a cc issue. Just hard to go to a gluten-free household and replace kitchen items when I'm yet to be convinced that gluten is even my issue. My pcp thinks the exhaustion and fogginess could be onset of migraines (since this last episode was relieved by caffeine and a motrin) and has me adding magnesium to my supplements. I found one that is calcium, magnesium, and betaine HCL, so we'll see if that helps at all. She won't entertain further testing (hormone levels, genetics, etc). I'm considering looking for another PCP as she's just in such a rush all the time and the follow up paperwork she gives me after appointments lists "wheat avoidance" on my management plan. Either she's super clueless about gluten or she's trying to keep it in layman's terms. Clearly gluten and wheat avoidance are not exactly the same.

Wanted to add that I will keep doing a food log to see if there's a common trigger. I have continued to eat greek yogurt, cheddar, and ice cream. I have enough of these items almost daily and I would think that if I had a dairy issue it wouldn't strike just a few days a month. In the past few days I've experienced bloating and distention after:

rice cereal w soy milk

polish sausage w saurkraut

ground turkey w cannelini beans

no common ingredient to any of those.

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Gluten had started giving me migraines. Not daily, they were triggered by bad seasonal allergies or bright lights (action movies, car headlights).

So, if you are getting cc'd at home that could be doing it.

Also, I went through hellacious headaches going off an antihistimine. Tylenol fixed it. I get a few headaches now when the barometric pressure changes dramatically.

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I have another episode of exhausting/fogginess starting now. I didn't have breakfast before my doc appointment, just coffee. Got to work at 9:30 and had a greek yogurt (something I have almost daily) and a handful a nut thins. Took my vitamins. Now just 1hr later and I feel it creeping in behind my eyes along with a bit of a pounding heart beat. It's not a headache. It's more a tired, dizzy feeling behind my eyes. Almost like a buzz from alcohol. It's noticeable enough to be distracting from my work. If it follows a typical pattern it will get worse as the day goes on to the point that I'll want to just curl up somewhere and rest. I'm just so frustrated at not knowing what is causing it. I'd rather feel bloated and have heartburn than this feeling cause the others I can live with but this exhausted feeling is overwhelming.

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My pcp thinks the exhaustion and fogginess could be onset of migraines (since this last episode was relieved by caffeine and a motrin)

Actually, I don't get migraines but when I get glutened, the first thing I crave is a diet coke. I try not to drink them every day, but as soon as I get glutened, I have to have one. The other thing I crave is sugar. So maybe the exhaustion and fogginess is from the gluten. Or it could be from the onset of a migraine caused by gluten.

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In the past few days I've experienced bloating and distention after:

rice cereal w soy milk

polish sausage w saurkraut

ground turkey w cannelini beans

no common ingredient to any of those.

True, but the first and last would do me in. I *might* be able to handle the polish w/ sauerkraut.

Migraines are so common with celiac, that if they were indeed pre-migraine symptoms you were experiencing that would rule gluten in more than out.

Running a mixed household is incrediblyl difficult when it comes to cross-contamination. Cc alone could explain the variability of when your symptoms occur.

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I have another episode of exhausting/fogginess starting now. I didn't have breakfast before my doc appointment, just coffee. Got to work at 9:30 and had a greek yogurt (something I have almost daily) and a handful a nut thins. Took my vitamins. Now just 1hr later and I feel it creeping in behind my eyes along with a bit of a pounding heart beat. It's not a headache. It's more a tired, dizzy feeling behind my eyes. Almost like a buzz from alcohol. It's noticeable enough to be distracting from my work. If it follows a typical pattern it will get worse as the day goes on to the point that I'll want to just curl up somewhere and rest. I'm just so frustrated at not knowing what is causing it. I'd rather feel bloated and have heartburn than this feeling cause the others I can live with but this exhausted feeling is overwhelming.

Have you checked to make sure those vitamins are gluten free? Supplements can be labeled gluten-free and still have wheat and barley grass (which you don't want). Also check with the maker on all OTC drugs and scripts.

To help with CC without expense toast your gluten-free breads on foil in the oven or toaster oven and strain your gluten-free pastas using the clean pan lid or holding them back while draining with a fork. Cut stuff on a plate rather than the cutting board you used to use as those can harbor gluten. You also don't want to be baking with flour for others. If your family needs baked goods for now get them premade.

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Migraines are so common with celiac, that if they were indeed pre-migraine symptoms you were experiencing that would rule gluten in more than out.

Interesting. Thank you for the perspective.

Have you checked to make sure those vitamins are gluten free? Supplements can be labeled gluten-free and still have wheat and barley grass (which you don't want). Also check with the maker on all OTC drugs and scripts.

To help with CC without expense toast your gluten-free breads on foil in the oven or toaster oven and strain your gluten-free pastas using the clean pan lid or holding them back while draining with a fork. Cut stuff on a plate rather than the cutting board you used to use as those can harbor gluten. You also don't want to be baking with flour for others. If your family needs baked goods for now get them premade.

Thank you for the advice on lessening cc. Thankfully I live in the land of Wegmans and buy Wegman's brand vitamins. Wegman's is fantastic with labeling and a nice gluten-free logo is on all of their gluten-free products, including vitamins so I'm ok there. I will definitely work with DH (who does most of our cooking) on being more vigilant about cc.

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