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Andirubes

Pain, Bloating, Even After Strictly Gluten Free

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I'm new here, and didn't want to join a forum because I thought I was doing everything right and that I would feel better. But, alas, I'm on vacation, sitting in bed depressed while everyone is out on the beach. Im admitting to needing help.

My story in a nutshell: I'm a 33 year old female, 110lbs. My while life I've had intermittent bouts of what I was told was IBS and microscopic colitis (but in the past, my symptoms were tolerable). Over a year ago, I randomly started having diarrhea. After a month of that, I finally was told I had cdiff (only my last test tested positive, was never on antibiotics, and no one else had it, so I'm not sure what to think of it since every test since was negative). Was treated with vanco, felt a bit better but not great, so I had a colonoscopy that showed microscopic lymphocytic colitis. Was treated for 3 months with budesinide but was getting even worse. Finally, 3.5 weeks ago I tested positive in my lab work and biopsy for celiac. I have been on a strict gluten free diet for almost a month now. I had a few "ok" days in there, so I thought I had hope. But, I'm not better. I just had a severe stomach attack, starting with extreme fatigue, then intense stomach pain, then spent a while in the bathroom. Now I'm left with bloating and an uneasy stomach. My last acute attack like this was over a month ago, but my typical daily symptoms seem to be that mornings are worse, waking up with bloating, then gurgling, gas, then sudden bathroom urges. Them things calm during the day. Usually my typical day is ok once I take immodium or pepto, but when I get this "extreme attack" like today, pepto doesn't help.

What am I doing wrong? Is this normal to keep having attacks if I'm not eating gluten? If it is normal, what is the cause? I'm so lost, and frustrated. Do I give it more time? My followup isn't until October, but what else can be the cause? I'm so afraid that I will never get better, or that I have something else going on but had other tests (barium swallow and other bloodwork was ok). I have hypothyroidism and take levothyroxine but the company told me there is No gluten in it. I have my own wash cloth and utensils, my makeup and hairspray are gluten free too. I'm at a loss. Please help me. :-(

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First thing you should do is read the "Newbie 101" Thread under the Coping section.  This has very important information for new Celiacs.  Learning and patience are the keys to feeling well.

 

Welcome to the Forum.

 

Colleen

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I had similar symptoms of pain and bloating despite being gluten-free for months. It turns out I had an intestinal bacteria, as determined through a stool test. After 10 days of antibiotic and starting the probiotic VSL #3, the pain is now gone. 

Can you have your doctor order a stool test? 

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If you haven't eliminated dairy yet, try that.  I had the same symptoms return after 2 years gluten-free and it was the dairy.  I can now tolerate dairy lite but not full scale dairy amounts.

 

Hope you feel better soon!

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I definitely think you need more time to heal. Here are some more tips:

-- give up all dairy for a while. You might not just have a temporary lactose intolerance, but an allergy to milk proteins (casein) and allergies can develop at any age. Re-introduce it later when you are symptom free.

-- take L-gLutamine to help heal your intestinal tract

-- take probiotics to add good bacteria back into your gut

-- consider enzymes

-- read all labels and watch for cross contamination. My home is gluten-free since my husband has gluten issues, but my 13 year old is not. She eats gluten outside or at school. If she cooks or gets a snack it is gluten free. I really do not want to worry about crumbs, etc. in my house. I just baked gluten-free cookies and brownies and she is gobbling them up right now! She prefers homemade gluten-free to any store-bought gluten-containing goody. Cross contamination also means asking your hubby brush his teeth after consuming gluten! That includes kissing gluteny little sweet baby faces too!

-- keep a food journal. I have many allergies that I knew about long before my C D dx, but I discovered intolerances too like Xanthan Gum which is in many gluten free processed foods. It is something that does not bother my husband, but bothers me. Go figure!

Hang in there!

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Thanks for the advice! Maybe I do just need more time. I will try your suggestions. As far as gluten-free household, my husband and I currently live with his italian parents who will not go gluten-free, but both he and I have separate cooking items and are careful. He's also very good with the kissing thing. Lol. But just my frustrations with the randomness of the attacks is getting to me.

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Hi there.  Have you read the "newbie 101" thread in the "Coping" section.  It has great information on beginning a gluten-free diet, all the precedures to get used to, how what to replace for gluten-free etc.   Most people make the whole Kitchen gluten-free, but, like myself we can also make a shared kitchen extremely safe for Celiacs.  Yes, in my opinion, your are getting contaminated in your kitchen.  Also check all your medications, suppliments, seasonings etc.

 

Hope that's all it is.  Hang in there.

 

Colleen

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All it would take is to dip your knife into the same butter/mayo/whatever that your in-laws dipped theirs into. Even if you have seperate condiments, can you be sure no one else has used them when you weren't looking?

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I use only squeezy bottles and have my own fridge. But the kitchen itself is for everyone. But yes, I'm extremely careful and all y items are marked and in a different section of the kitchen. I feel like I'm following all the rules. I just wish I would FEEL all the work I'm putting into it! Thanks everyone

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What type of intestinal bacteria did you have? All my issues started with an unexplained occurrence of cdiff, which was treated and have since tested negative. As far as dairy, I've switched to lactaid and really try to avoid it.

I had Citrobacter Freundii bacteria, which has gas, bloating and diarrhea as symptoms. I've been doing much better with those symptoms since finishing the antibiotic and starting VSL #3 probiotic, which is expensive, but I believe it is actually working, compared to other probiotics I've used in the past. 

 

I agree with the other posters about giving up all animal-based dairy, even Lactaid. I realized I was lactose intolerant 9 years ago, and since then have developed dozens and dozens of other food sensitivities and intolerances, which should have been a clue for celiac disease and leaky gut (which I also have). My physician has me using a supplement called Orthomolecular Inflammacore to help heal the leaky gut. It contains l-glutamine, as another poster mentioned, as well as some other supplements designed to heal the gut. 

 

One resource that has been helpful to me is a book I read about on this forum called "Real Life with Celiac Disease." I got it at my local library. It has made me think about things I never would have thought about before. 

 

I am fairly new to the diagnosis as well, though have been eating gluten-free since last fall, so I'm learning, too. But I've felt miserable for so long that I'm happy just to feel somewhat better. Even feeling a little better is a big difference. 

 

Hang in there! 

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You say you are on vacation?  Did you try eating out?  It does sound possible you got some gluten, but could be too just your body making some response to the new diet.  It is difficult at first, but if you keep walking in the right direction, you are bound to make progress!

 

Dee

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I was on vacation but ended up just buying food from a store to make for myself. I can't figure it out. I had another really rough day today, and have only been eating whole foods and staying away from corn, soy, milk, etc. I'm so bummed. Has anyone else had this where you have a few "ok" days and then out of nowhere you're hit with a relapse of symptoms?

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Yes, I am still dealing with that. Every few days (4-5) I have a bad tummy day, which I attribute more to the leaky gut than directly to celiac or any food I am eating as I eat very clean. I am still dealing with extreme, overwhelming fatigue, which is often more frustrating than GI issues. 

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I was on vacation but ended up just buying food from a store to make for myself. I can't figure it out. I had another really rough day today, and have only been eating whole foods and staying away from corn, soy, milk, etc. I'm so bummed. Has anyone else had this where you have a few "ok" days and then out of nowhere you're hit with a relapse of symptoms?

 

Maybe you have a virus and it's not from being glutened?

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I still think you need time to heal, but....you may have developed food intolerances. Start a food journal. I have had allergies all my life, but have developed a few intolerances since I have been diagnosed with celiac disease. For example, Xanthan gum affects me intestinally just the way gluten does. I kept eating gluten-free bread that would affect me, but not my husband. Go figure!

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Andirubes, it still happens to me.. after 18 months gluten-free. To be fair, I have actually been glutened, I think, but it was on my FIRST day of holiday (and then I got glutened again as soon as I got back to Rome having steak and roast potatoes in a restaurant I've been to before. How do I know? well--- the explosive consequences coming in one hour later are proof enough to me).

 

However, you have been just one month gluten-free. One month! You need at least six months for your guts not to react to any kind of irritation. Think of this: if you had a skin burn from an acid and you stopped slowly pouring acid over it, you'd get better. But anything apart from soothing creams would NOT be appreciated by your burnt skin while it heals. How long? Well. You are young, you should get better sooner than me! But do not get scared if you get sick apparently with no reason. it is, unfortunately, completely normal. But it DOES get better, believe me. It's a lifetime care and you cannot slip but it does get better

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I totally appreciate all the encouragement. I'm so glad I joined this forum. I'm sad that so any suffer from this but it's good to get advice from those who have experiences. I'm taking all your suggestions. We shall see what happens! Thank you again

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I'm still trying to hang in there with all of this. Just wanted to see if anyone had worse symptoms I'm the morning. As soon as I wake up, I feel ok for like 2 minutes, then the gas and bloating and pain start. Then I have to use the bathroom. My stool is never normal (it always looks "fuzzy" and breaks aoart easily...sorry for tmi). I do not eat anything after 8 pm. I've tried eliminating other grains and such, and am now drinking almond milk but seems to be no improvements. I'm over a month into this diet. I do seem to have less bathroom trips, so I'm trying to stay hopeful, but I feel horrible every morning. Does anyone else have worse morning symptoms?

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If your gut damage is pretty severe, it may take some time for it to heal, which would cause continued symptoms. Have you looked into other food intolerances, leaky gut or the FODMAPs diet (also this link)? I think the suggestion of keeping a food diary is a really good one. You can note what you eat and what symptoms you have when, and you might start to develop a pattern. 

 

Sorry you're not feeling better.

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Just wanted to give an update, since it's been a while, and maybe this can help someone else stay positive. I FINALLY started feeling better in October!  It took over 3 months to have ONE good day, and slowly, I realized that i wasn't taking pepto or immodium several times a day, and I'm not always in excruciating pain in the morning.  I am definitely not 100%, but I am able to have days where I leave the house without even worrying about having to run to a bathroom or take pepto.  I still have bad days, but i force myself to think back to how awful I felt. I have gained about 8 pounds back (woohoo...never thought i'd be HAPPY to gain weight)! 

 

Another positive: I just tried drinking regular milk again last week to test my lactose intolerance, and lo and behold...I am able to drink milk and can eat my regular yogurt with NO stomach issues! I suppose this is a good sign of healing.  Before, I couldn't even tolerate a few bites of yogurt.

 

Thanksgiving was pretty great, as opposed to last year.  I made my own meal, (my in-laws still aren't very helpful), and it was fabulous!  I thought my first holiday as a celiac would make me feel isolated, because my first gluten free summer vacation was terrible (dealing with isolation, and confusion, and eating out, etc.), but I'm feeling very positive since I made it through my first holiday with this.  I look forward to continued improvements, and living a healthier lifestyle. My husband is "mostly" gluten free with me (due to high grocery costs now, it's just easier), which has been very encouraging!  We both eat healthier; lots of veggies, eggs, fresh meats, yogurt, quinoa!  I didn't think having a shared kitchen would work, but it simply has to, and i've been thriving.  So, for anyone new to this weird disease, it can take time, and it can be difficult at first, but I've only been doing this diet for nearly 5 months and I can tell you that it becomes your "normal", and it does get easier.  I feel like a pro!  Thanks to all for their support and stories.  I hope to continue to improve!!

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I am happy to hear this report!  It does take work, but it is SO GOOD to feel better.  Hopefully, you will feel more consistently better as you go on.  Enjoy the highs, and hang on through the lows knowing they don't last forever.  Actually my lowest lows use to give way to the highest highs.  Now I have more consistent feeling good to great with fewer low points more due to allergies than celiac.

 

Best wishes to continue and thrive.

 

Dee

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