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Newbie Needs Advice
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My blood test for the celiac genes and the antibodies got sent off to Prometheus Labs today, but i feel pretty certain i already know i have it. i think i've had it basically my whole life, and i turn 54 this week.

my 20yr old daughter has had increasing stomach problems for the past 2 years, since she went to college. she's been allergy tested and reacted to a number of foods. since that time (about a year ago) she's become allergic to more foods (has an epi-pen), and was still having daily diarrhea. one of my friends recommended she talk to a local nurse who is an expert in celiac. my daughter is now 10 days into a gluten/dairy free diet and feeling infinitely better. i feel like my "old" daughter is returning, physically, emotionally and mentally.

in reading online to educate myself for her benefit, i realized it's obvious i probably have it and my mother probably had it starting when she went to college at age 16. i sent info to my brother, who said "my stomach stopped working at 25" and he is doing a gluten-free trial as well. my first food allegy showed by by age 9 - bacon. by 15 or younger i was lactose intolerant and allergic to all citrus. (i was given citrus fruits at 2 weeks of age because the pediatrician told my mom i needed vitamin C. when i vomited across the room after a teaspoon of orange juice, the doc had her keep giving it to me and then switch to other citrus juices. i don't know how long that went on before my mom ditched the doc's advice, but the consequence is the lifelong allergy to citrus.)

at age 17, i went off to college and had a major digestive disaster that lasted for years. (yay for digestive woes when you live in a dorm!) i went to a gastroenterologist who did a sigmoidoscopy & said i had "dumping syndrome" meaning that i couldn't digest fats. except it was never just fats, although fried foods were always terrible.

at age 18, i did a 2 week fast, only eating chicken, rice, apples and bananas. my terrible cystic acne completely cleared up. i kept trying to add new foods one at a time. i learned i was highly allergic to citric acid. anything fried goes right through me, although i can eat something like a Marie Callendar pot pie with a ton of fat in it without problem if i eat it with digestive enzymes. i also became very allergic to cinnamon. i can't eat sesame seeds, although i can have the sesame oil. anything with peppers, paprika or smoke-seasoning (think smokehouse almonds) makes my face break out in a rash and if i keep eating it, it turns into acne pimples. poppyseeds make me break out also. my doctor said it was in my head, of course, but it's actually on my face. and apparently, in my gut. years later a different doctor told me i have rosacea and that what happens to the skin on your face happens to your gut as well - although that doc diagnosed based upon my story and not seeing it.

so . . . when i was perhaps 22 i discovered Lact-aid drops that you could put in milk to break down the lactase. that worked for me. the tablets came later and sometimes they worked and sometimes they didn't. i knew i didn't digest well because some foods i could eat separately, but not together. i could eat a steak or baked potato or green salad (no white or iceberg lettuce), but not together. i kept trying things from the health food store - first hydrochloric acid, which was a weird buzzy feeling that i only used once. somewhere in my 20's i became allergic to strawberries and discovered i was allergic to oregano & basil. later it was pork. then i found GNC's digestive enzymes in my late 30's. that turned my life around. through all of this, bread products (cookies, cake, bread, doughnuts) were food that i could always count on NOT upsetting my stomach.

i began taking the digestive enzymes with pretty much every meal, unless it was only carbs. they made it possible for me to eat all the things that i'm not directly allergic to.

as one my friends with celiac said to me - i'm getting along ok because i have a lot of things propping me up. i usually eat a bagel or waffle for breakfast, then take the digestive enzymes with lunch & dinner, take the lactase enzyme once a day and that covers most milk products that i eat. if i have something with a ton of milk, like a bowl of ice cream, i take Accuflora. with all those things, i probably have an upset stomach perhaps once a month or even less often.

from my mom's history, i'm fairly sure she had it. she had ulcerative colitis for nearly her whole life, but from stories, i'm pretty sure about the celiac. we never knew. i contacted a bunch of my maternal cousins - one is already gluten-free and the others had waaayyyy too many auto-immune diseases and terrible health that i never knew about, including lactose intolerance, crohn's, colitis, diabetes, fibromyalgia, cancer and meniere's disease. most seem like they could be related to celiac.

today i stopped eating gluten, but unfortunately my digestive enzymes say they are "low-gluten" but not gluten-free. i had dinner tonight for the first time in who-knows-how-long without the enzymes. i made soup with broth, turkey, rice, carrots, broccoli, onion and garlic - which should all be ok. but my stomach is hugely bloated and unhappy feeling. it should've been a harmless meal.

does anyone have thoughts for me on something to help with my digestion that is gluten-free? i read that eventually enough healing may happen that i *might* be ok, but i have to think if i've had this basically all my life and didn't know it, there must be a chance that the damage is done. i think the digestive enzymes have kept me "healthy" through all this and i don't know how to get by without them. over the years i asked multiple docs why i need digestive enzymes to eat and no one ever knew or pursued it - and honestly, i felt healthy, although now i know i wasn't. or did the digestive enzymes protect me in some way? this weekend i looked online what might cause a person to need to take digestive enzymes and the list was short: pancreatitis, cystic fibrosis, pancreatic cancer and celiac disease. :-(

i also feel a little despair because the recipes i'm finding are often full of these other things i can't eat - like the seeds and citrus. i could really use some ideas, especially about the digestive enzymes. i don't want to return to the life of having to run to the bathroom before i've even finished eating.

i reluctantly sorta get it that i can still be celiac and think i'm ok eating bread. sadly. and i don't want the future with autoimmune diseases that i've read can be coming if i continue eating it.

i'm sorry for writing a book! help would be very welcome. this sucks. i see many of you have learned to cope with it and i would welcome your wisdom. thanks so much.

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Hi Madagascar,

Welcome to the forum! :)

You need to get tested right away if you want to know if you have celiac disease. You really shouldn't stop eating gluten until all your celiac testing is done. The antibodies will start declining after you stop gluten and the tests depend on them being at high levels in the blood stream.

You won't know what foods you can safely eat until you are gluten-free for quite a while. At the beginning of the gluten-free diet people tend to react to all kinds of foods that later may not be a problem. Your digestive system is not in pristine shape at this point, and it won't act like it is until it heals a bunch. You may find relief by taking your digestive enzymes and taking pro-biotics also. Also avoiding sugar, starchy foods and alcohol can help. Treat your gut like a sick patient that needs tender care and good wholesome, simple foods to heal. In our case that could mean chicken soup but without the noodles. Getting your gut healed up doesn't take one day, it can take months or years. You are also going to change the bacterial flora mixture in your gut which can have a large impact on how you feel and even what vitamins you absorb. Also the die off of unneeded bacteria can cause issues. All this means is that you need to expect the good days to be mixed with bad days as you get started, which can be a couple months or more.

But don't despair, we all started at some point too and even sometimrs remember what it felt like to be a newbie. It really is a big change in diet, and the change is good but not nessecarily easy for everyone. But it is a very worthwhile change when you start feeling better for months at a time. :)

Helpful threads:

FAQ Celiac com

http://www.celiac.co...celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

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hi paul, thanks for your reply. the blood tests were taken yesterday, and i didn't start gluten-free til after they were done.

thanks for the link - i found the newbie 101 post last night after i'd posted, but couldn't edit my post because i'm new and it had to be approved before it posted. i saw the info in there about Digestive Gold enzymes. turns out that the store closest to me sells them, so i ran out this morning and bought some. hopefully they will keep me able to eat while i wait for my gut to heal.

i should get the test results back on Monday for both the antibodies and the genes.

it's a little overwhelming.

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Madagascar, yes, continue taking digestive enzymes, however, DO find safe ones. This is

not hard- I get mine at Trader Joe's, any Whole Foods or health food store should have it,

or there's always the "big evil river" website (I say evil because they spammed the board

and are banned) you can order from, or Vitacost. Probiotics are also a good idea at this

point, I take PB8, other people will recommend other brands.

Your tummy will not get all better right away. You are on the right track and it sounds

like you have a good handle on how to feed yourself properly. Yay!

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blood tests can be inconclusive you may also wish to do the endoscopy for a biopsy. There is also a genetic test.

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    • Hi everyone, I've been reading this forum sporadically and have some questions of my own. I'm in my 40s and was diagnosed with celiac last December by biopsy and blood work after months of tests by my primary and then a gastro. My husband, around the same age as me, was dx'd with stage 4 cancer a month later, so admittedly it's took me longer than I'd have liked to learn about celiac. Now I feel pretty on top of my diet. I mostly make my own food - proteins and veggies, with some certified gluten-free snacks in the mix - and am pretty strict about what I will/won't eat at friend's houses or in restaurants (I prefer to go to dedicated gluten-free kitchens whenever possible). I'm doing okay on the diet, but still getting glutened every so often, usually when I let me guard down outside the home. I also periodically see my primary and a naturopath (who happens to have celiac!), but still, I have many questions if anyone would care to answer:

      -FATIGUE. I'm still so tired, fatigued so much of the time. My doctors blame this on the stress of my husband's diagnosis and my periodic trouble sleeping. But even during weeks where I'm sleeping enough (8-10 hrs a day), eating right, exercising as I can, trying to keep stress at bay, I'm still so bleeping tired. Maybe not when I wake up, but by late afternoon. Often my legs even feel weak/wooden. Has anyone else experienced greater fatigue early on after being diagnosed? This will pass, yes? I know I could cut out the sweets and that could help, but also, being a caregiver is hard and sometimes it's nice to eat your feelings between therapy sessions.  

      -SYMPTOMS CAUSED BY FATIGUE? Sometimes I'll have other "feels like I've been glutened" symptoms if I haven't gotten enough sleep, though I'm trying so hard to sleep at least 8 hours a night these days. Hasn't happened in a while thankfully, but there was a point this summer where my insomnia was bad and my arms were achy and I had some crazy flank/back pain I'd never experienced before. For weeks. Doctor ordered me to sleep sleep sleep, taking Benedryl if needed. I did, and the symptoms went away, but weird, yes? Has this happened to you? I ask because I want to make sure I'm getting all strange pains tested to the full extent if there's a chance it's something other than celiac. I do sometimes still feel that strange side stitch after a CC incident.

      -SKIN PROBLEMS. I have had a smidge of eczema since I was a teen and it - and the dermatitis herpetiformis I've acquired with my dx - are out of control right now. I recognize the connection with stress, but also, has anyone found any great natural remedies for DH to stop the itching? I've tried so many useless ointments and medicated creams, a number of them given to my by a dermo months ago. I see my naturopath this week, but thought I'd ask here too.

      -MOSTLY gluten-free KITCHEN GOOD ENOUGH? My husband is supportive of my diet and mostly eats gluten free meals with me, but we still keep a gluten-y toaster for him and the gluten-y dog food in a corner of the kitchen and he still makes the occasional meal with gluten for himself on his own cookware (ravioli, pizza, mac n cheese, etc). Or sometimes I make eggs/toast and the like for him when he's too sick to move. Otherwise, we're militant about how we cook, which cookware we use, etc. He even has a kitchen nook off our den where he makes sandwiches. But sometimes I wonder if having two separate sponges in our shared-ish main kitchen is enough and I should just banish all gluten whatsoever from the kitchen. I can't be the only one with a mixed kitchen, right? How do you do it if you have a mixed-eating family?

      Thank you so much!  
    • Hang in there!  Count your blessings.  Do something you like to do and relax. I know that is hard to do as a young mother (as I sit here in the kitchen sipping coffee quietly as my teenager is sleeping in after a late football game last night where she marched in 90 degree plus weather in full uniform).   But seriously, take a few minutes to relax!  
    • Meredith, this is very true. A colonoscopy is for diagnosis of the lower intestine, endoscopy for the upper intestine.  How did your doctor interpret the tests? I suggest you read the link Cycling Lady gave you because it contains a lot of good information. 
    • Sorry, but this product (supplement) is not even certified gluten free.   Seems odd that a product geared to Non-Celiac Gluten Intolerance would not take the extra step of getting certified.   I guess I am a Nervous Nellie, especially after the reports that several probiotics were contaminated with gluten.   https://celiac.org/blog/2015/06/probiotics-your-friend-or-foe/
    • Thank you for posting that. I've had a lot of that bloodwork done and everything is normal. At the peak of this belly bug I had blood work done and my white count was fine. I think it's just my health anxiety scaring me into thinking this is something scarier (to me) than celiac. Maybe the anxiety will subside once I go gluten-free. The anxiety is brutal.
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