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How Do You Handle Bad Days?
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I've been gluten free for only 2 months, seems like an eternity some days. HOw do you guys handle bad days, when you don't feel good or having a marathon bathroom day? :( I've just been down in the dumps, not feeling well, and just was wondering. I started taking some vitamin B12 and vitamin B6 and those seem to help, I take one pill of each every other day.

BamBam

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Dear BamBam, I have been gluten free for about 10 months now with one glaring departure in August. Have done well since. Today, I , too, am having a bad day. Diarrhea this morning and usually I am "ibs Constipation". However, lately, have more of a tendency towards loose bowels. It is at least a help that the stools are not urgent like for some of the folks on the board. I guess, mainly I just keep on as well as possible with my usual activities. Today I ran the library at our little parochial school. Bathroom right in next room and time between diffenet classes coming to use the library. I excuse myself from anything involving early morning duties as that is when I am most likely to have trouble. I am in process of trying to include some different foods that are allowed on the SCD diet . I am lactose intolerant which is even more limiting and don't get along with many fruits. I tried some fairly bland applesauce yesterday. Think maybe that may be to blame for today's troubles. I do keep a journal of both every food I eat and when I ate it, and also what symptoms I experience during each day. It is time consuming and maybe not altogether possible for someone who has regular employment, but even just jotting down what one can from memory can be helpful. Then it is possible to compare what you have eaten with your symptoms. Actually, I have an extra-large colon and I know from a test that it may take as long as 5 days for a particular food to pass entirely through my system. So matching up large bowel symptoms with foods is somewhat iffy unless I have eaten something like beets, or a very dark green salad or somethng with a special consistency. I think your idea of trying b vitamins is a good one. I have started taking a b complex tab. and extra calcium 1 350mg. tab with each meal. I tend to forget to take the calcium at noon. I only do the b's once a day and haven't done more than 2-3 days. I have also been using magnesium, but think I may cut that out in view of the diarrhea. Hoe this helps. Cheers! Ruth S.

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hey bambam-

I know how fristrating those setbacks are. The things I do when I get sick are

1- retreat. go to bed, hop in the bath, cancel all social obligations possible that day

2- drink tea and chicken broth, and when I feel a lot better, some rice with butter and salt and pepper

3- call my sister- she is also celiac, and understands

4 try and be patient while my body sorts itself out

the last is the hardest for me!

Lib

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I haven't had too many problems, but one thing I did try when I was having GI trouble was doing a low-residue diet. Mostly meat, next to zero fiber, and some refined grains (like white rice), and not even a lot of that. It gives your intestines a bit of a break from having to push too much stuff all the way through, if you know what I mean. Of course, this isn't something to do for more than a handful of days, but - as other people have noted - changing to very easily digested foods for a bit can sometimes at least give you a break from your body. ;-)

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BamBam: Funny you should ask :blink: ... I just had a TERRIBLE day yesterday ... my first gluten reaction in almost 4 months. I had forgotten how bad those excruciating abdominal pains could be (like bits of broken glass stuck in my intestines). :o

I tried my usual remedies for bloating, gas and cramps like drinking peppermint tea and doing some pilates or yoga which focussed on my stomach. Those seem to help my dairy/soy reactions, but didn't do much for my gluten reaction. (My gluten symptoms differ from my dairy/soy symptoms.) What did help that horrible pain was standing in the shower with a concentrated hot water spray on the spot that hurt and then taking a long walk. Laying in bed with my knees pulled up to my chest helped, too. When the pain subsided today, drinking lots of hot water or herbal tea also helped. I drank so much peppermint tea that I got acid reflux (relaxed my esophagus too much). :blink: So I switched to Lipton decaf today.

Beyond physical stuff, I emailed some friends that I was struggling and called my hubby for some sympathy. Knowing a couple friends were praying for me helped.

BURDEE

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My husband has celiac disease along with the lactose problem since April. He does have bad days when he accidently gets into something that's contaminated. His system also can't handle too many oils, especially from any type of peppers.

Worse than the bad reactions to foods, are the days when we go out shopping or just running around the mall and he smells all the foods cooking and realizes that he can't eat any of it. He has bad reactions to spices in Itallian, Mexican and oriental foods. It's so sad to see him in tears, because he really misses his favorite foods. I've tried to make pizza, speghetti, Mexican food but just haven't come up with something that he can tollerate because of the spices. He never thought he'd get tired of eating Steak and Baked potatoes. I did make my own version of scolloped potatoes last night. Came out great. gluten-free and Lactose free. Slowly I'm trying to convert some old recipes.

I finally got up the nerve to make my own bread yesterday. Didn't come out too bad. It sunk a little but at least it was edible. But I did notice that the texture was a little rubbery. May have put in to much water. Will have to try it again. We've been eating Millet Bread From a bakery in Deland, Fl and they've been known to have contamination problems in there gluten-free bread. If anyone has any suggestions on food it would be greatly appreciated.

Thanks for listening, Wife of a celiac disease

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Hey everyone!

My day has been okay--I'm just annoyed at a cross-contamination episode that I experienced this morning.

I was talking to a freshman boy while he was making eggs on the egg griddle. I noticed that he had bread on his plate. I watched him like a hawk to make sure he didn't cross contaminate. He called to his friend, asking the other gentleman to bring him some more bread. Then, of course, he touches the bread with the spatula, then touches the spatula to the griddle. He scraped the excess egg off of the teflon and said, "Here you go." LOL! "Here you go, have some GLUTEN!!"

The cafeteria ladies were promptly alerted of this (I was miffed). One washed the spatula, which was fine, but instead of washing the egg griddle, they simply used a paper towel and SMEARED THE GLUTEN EVERYWHERE!!! <sigh> Rant over. I'm talking to the Food Services director today. Apparently I haven't made cross contamination issues clear to the staff.

I hope everyone feels better!!!

Sincerely,

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Hi Scudderkidwell (Wife of a celiac disease):

I also have problems with spices. If there's any pepper on my food, I can't taste anything after the first bite. I'm not sure how it affects my intestines, but I do experience much more gas and bloating after consuming any pepper. I focus on meals with meats, fresh vegies and starchy vegies (potatoes, yams, beans) or gluten-free pasta seasoned with herbs and olive oil. I can tolerate some cinnamon or cardamon, but no HOT spices, raw onions, or even acidic condiments like mustard, catsup, etc. I feel much better with simple salt and herbal seasonings. Nevertheless, varying the 'meats, fish, poultry, vegies and starches' meals with entree soups, entree salads, and stir fry dishes gives me lots of variety. I do Mexican tacos or tostadas WITHOUT all the spices, since I love refried beans, corn tortillas and avocados. (I omit tomatoes and cheese, since I can't eat dairy or acidic stuff.)

As for breads, if you're willing to order online there are MANY different varieties of gluten-free breads. Fortunately, I live near the Ener-G Foods bakery/factory in Seattle, so I can just pick up any of their many varieties of breads, pastries or pastas. Their gluten-free breads vary from some which resemble 'white Wonderbread' to heavier 'whole grain, dark' breads to sourdough tasting 'corn loaf' and lots of others. However, there are many other brands of gluten-free breads which you can order or perhaps find in local 'Whole Foods' or health food stores. I've sucessfully used gluten-free cooky and flour mixes to make quick breads and cookies, but prefer to buy other breads locally.

BURDEE

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    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
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    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
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