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I've Had Enough :(


Kimbalou

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Kimbalou Enthusiast

Don't want to be too graphic, but I have to ask: how many times do you go #2 in a day even if you are not eating gluten? I keep waking up every morning going at least 3 times in a row even when I am on the diet! I am trying my best, but I'm wondering if it's dairy, too. Maybe those Reeses PB Cups?? I am not drinking regular milk, just Almond milk. I feel like I can't eat anything anymore without taking Immodium. Yesterday all I ate was rice, peas, La choy soy sauce, reeses, and a few chocolate toffee things that didn't have wheat on the label. I am so sick of feeling like this! I've been on the diet for almost a month now. I just feel like only eating rice or potatoes so I can stop having these issues. I wish I could just skip ONE day without going #2. I am sensitive to everything!

Thanks for listening to my not so pleasant rant!


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chasbari Apprentice

Is your La Choy Soy Sauce gluten free? There are definitely those of us who had to cut out dairy, soy and other grains initially as well. You don't say how long you have been at this. As to being "on the diet" are you doing this because of diagnosed celiac? If so, spend plenty of time here reading as much as you can so you are able to start identifying all the possible sources of dietary contamination, how to set up your kitchen, what to look out for.. lots to learn. Three years in and I am still learning every day.

bonnie blue Explorer

Thank you for posting this, I have the same problem!!!! I have cut out dairy and eggs and still everyday the big D!!! I do have an appointment with a new doctor tomorrow, so I hope that he can help me. I do understand your frustration, and now with Christmas so close I am basically feeling really left out of all the good holiday food. So I am here for you, sending you a big hug and hope you have a good holiday.

Emilushka Contributor

I can cut it down to 1-2 times per day if I'm off gluten, but if I get glutened I get up to 4-5 times per day.

La Choy soy sauce is gluten-free. So is the Kroger brand soy sauce in my area (check your local labels to be sure though!)

starrytrekchic Apprentice

Make sure the chocolate isn't cross-contaminated in factory. What's the brand? A lot are cc'd and it's not on the label.

Are you getting enough fiber?

srall Contributor

You may have to move to a whole foods diet for awhile. However, when I first went gluten free and my body was detoxing, I went to the bathroom, and I am not kidding: about 5 to 6 times a day. I felt like my body was just finally expelling all of the poison it had consumed for years. Your body may settle out on its own. I'm not advising against seeing the doctor though.

missy'smom Collaborator

Before gluten-free, I would have multiple soft stools in the a.m., rather urgent after I woke up and several trips to the bathroom before my system cleared out and left me feeling not like eating B. No prob during the day, except for that big distended abdomen.

After gluten-free, got much better but still had loose stools in a.m., not as many and not the nausea but GI still uncomfortable at night.

What finally got me back to normal all the time, nice formed BM's a couple times a day, etc. is ditching the foods that I'm allergic to. Found that out through allergy testing. I can tell now if I've ingested something my body doesn't like 'cause those old symptoms come back.


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rosetapper23 Explorer

It can take a long time to get your gut back into shape after gluten free. It took me 18 months before the frequent diarrhea finally went away, and I was very strict with my diet. By that, I mean that I ate NO processed foods whatsoever--just natural foods. Also, what finally healed my gut was L-Glutamine. This is oftentimes recommended at celiac conferences, and it really does help.

GFinDC Veteran

... I just feel like only eating rice or potatoes so I can stop having these issues.

....

You are on to the right idea. What you are describing is an elimination diet. Eating a few simple foods for a while and then after your digestion settles down slowly adding in one additional food at a time. You basically test your bodies reactions to foods one food at a time. Since we are all blessed with our own individual differences this is a good way to find them out.

I wouldn't do regular potatoes myself though, sweet potatoes are less likely to be a problem food. Usually people start an elimination diet with 5 foods and buildup from there. But you wouldn't want to start with any of the top 8 food allergens or common food intolerances for celiacs either.

FooGirlsMom Rookie

Hello,

I had been struggling to not go several times a day too. And yep some of it was the big D. Cutting out corn helped some, but I was still having trouble. Almond Milk (The Silk brand) was really messing me up. Not sure why - heard the carageenan can upset the stomach but never identified it. If I ate more than 1 slice of Udi's bread the same thing would happen.

The only thing that has returned me to somewhat normal is more of a whole foods diet, vs. the substitutes. Cut out dairy, soy, & corn. EAting white jasmine rice helped too. But still, when I had a Betty Crocker brownie I made for my daughter & family (they were fine) I got bloated and ended up in the girls room. :(

Hang in there. Mine seems less & less now. I think it's the intestines needing to heal partly. gluten-free Biquick mix will do the same thing...

FooGirlsMom

Roda Rising Star

I was fine for a year after going gluten free then in Jan. of this year I started with horrible heartburn again but instead of C I started in with D. I initally thought it was my gallbladder and did have tests that revealed a suboptimal functioning gallbladder but not bad enough to take out. Problems continued so I eliminated dairy for 6 weeks and saw no improvement in my symptoms. Had a repeat EGD in April that showed inflamation in the esophagus-small intestine but the small intestinal biopsy showed nothing this time. They also found an ulcer in my stomach. So I started on dairy free and zantac to help heal the ulcer. The ulcer healed (pain was gone in about two months) but the D was worse. I went back to dr. several more times and tried different things and nothing worked. Finaly in August I had enough. Fecal fat tests showed severe malabsorption(duh) and my Igg anti gliadin antibody was still strongly positive. The dr wanted me to take steriods and I refused. I decided that I would get even MORE strict with the diet by eliminating all processed foods even gluten free stuff I had been eating. I found out I had a problem with sesame and that dairy wasn't bothering me completly. I also started taking creon which helped so much. Well fast forward to Nov. and all the sudden my multiple bouts of D (that was being kept in check by taking the creon) turned into horrible constipation. I knew I hadn't been getting gluten and discovered the creon was causing the constipation all of the sudden. I quit taking it and after a laxitive to get things moving again, I havn't taken it since. I am no longer having the D unless I consume to much fat (still have an underlying gallbladder problem). So I now I am finaly healing again from the malabsorption. I was having problems with BRM products which I have consumed since day one of gluten free. There are a few brands I do trust now without having any problems. I am going to have my blood work done soon to see if it all paid off. The weird thing is that my reactions changed. So I would look at what you are eating, even gluten free stuff, and go back to a diet of fresh fruits, veggies and meats and cooks everything from scratch and look at cc in your home. It helped me a lot.

cap6 Enthusiast

you might want to try adding in some hefty servings of fruit and veggies. All that natural stuff.

plumbago Experienced

Don't want to be too graphic, but I have to ask: how many times do you go #2 in a day even if you are not eating gluten? I keep waking up every morning going at least 3 times in a row even when I am on the diet! I am trying my best, but I'm wondering if it's dairy, too. Maybe those Reeses PB Cups?? I am not drinking regular milk, just Almond milk. I feel like I can't eat anything anymore without taking Immodium. Yesterday all I ate was rice, peas, La choy soy sauce, reeses, and a few chocolate toffee things that didn't have wheat on the label. I am so sick of feeling like this! I've been on the diet for almost a month now. I just feel like only eating rice or potatoes so I can stop having these issues. I wish I could just skip ONE day without going #2. I am sensitive to everything!

Thanks for listening to my not so pleasant rant!

It's ok to be graphic, going to the BR is part and parcel of this disorder. But you did not say whether you are having D or BMs. For me, I do have 2 or sometimes three BMs in the a.m. (partly depends on how much I ate for dinner the previous night, naturally). It's a little irksome, but it's better than the D I used to have. I would second everyone's advice to eat more whole foods and vegetables. One month is not all that long to be gluten-free, to tell the truth. Many people would love to have BMs as often as you do!

My elderly father is kind of obsessed with them (I don't think he has celiac disease), and therefore whenever he can sneaks sugar in because he thinks it makes him go more. Someone told me it does, but I haven't verified that for sure, but sugar could be a factor.

-Plumbago

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      Not necessarily. The "Gluten Free" label means not more than 20ppm of gluten in the product which is often not enough for super sensitive celiacs. You would need to be looking for "Certified Gluten Free" (GFCO endorsed) which means no more than 10ppm of gluten. Having said that, "Gluten Free" doesn't mean that there will necessarily be more gluten than "Certified Gluten" in any given batch run. It just means there could be. 
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      I think it is wise to seek a second opinion from a GI doc and to go on a gluten free diet in the meantime. The GI doc may look at all the evidence, including the biopsy report, and conclude you don't need anything else to reach a dx of celiac disease and so, there would be no need for a gluten challenge. But if the GI doc does want to do more testing, you can worry about the gluten challenge at that time. But between now and the time of the appointment, if your symptoms improve on a gluten free diet, that is more evidence. Just keep in mind that if a gluten challenge is called for, the bare minimum challenge length is two weeks of the daily consumption of at least 10g of gluten, which is about the amount found in 4-6 slices of wheat bread. But, I would count on giving it four weeks to be sure.
    • Paulaannefthimiou
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    • jenniber
      thank you both for the insights. i agree, im going to back off on dairy and try sucraid. thanks for the tip about protein powder, i will look for whey protein powder/drinks!   i don’t understand why my doctor refused to order it either. so i’ve decided i’m not going to her again, and i’m going to get a second opinion with a GI recommended to me by someone with celiac. unfortunately my first appointment isn’t until February 17th. do you think i should go gluten free now or wait until after i meet with the new doctor? i’m torn about what i should do, i dont know if she is going to want to repeat the endoscopy, and i know ill have to be eating gluten to have a positive biopsy. i could always do the gluten challenge on the other hand if she does want to repeat the biopsy.    thanks again, i appreciate the support here. i’ve learned a lot from these boards. i dont know anyone in real life with celiac.
    • trents
      Let me suggest an adjustment to your terminology. "Celiac disease" and "gluten intolerance" are the same. The other gluten disorder you refer to is NCGS (Non Celiac Gluten Sensitivity) which is often referred to as being "gluten sensitive". Having said that, the reality is there is still much inconsistency in how people use these terms. Since celiac disease does damage to the small bowel lining it often results in nutritional deficiencies such as anemia. NCGS does not damage the small bowel lining so your history of anemia may suggest you have celiac disease as opposed to NCGS. But either way, a gluten-free diet is in order. NCGS can cause bodily damage in other ways, particularly to neurological systems.
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