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Diagnosed 6 Months Ago Still Having Problems


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18 replies to this topic

#1 gemini1962

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Posted 03 December 2012 - 03:33 PM

Hi I am new here and I was diagnosed in June 2012. Dr. said it was the worse case they have ever seen as it was in the small and large intestines. Confirmed by blood work as well. I am still not regulated having 5 to 6 bouts a day. Went back to the doctor ran blood work again to determine if I am doing a gluten free diet and it confirmed I am. I am so exhausted, drained and frustrated. I have started to take a pro-biotic and immodium to try to slow things down. Still having issues, any suggestions?
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#2 kareng

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Posted 03 December 2012 - 03:39 PM

Celiac is in the small intestine. I would go back and ask him what the biopsies of the large intestines showed - colitis? chron's? Something else? And insist they treat it.

http://www.celiac.or...&id=4&Itemid=10

http://www.mayoclini...disease/DS00319

http://www.celiacdis...rs/C02-What.htm
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#3 nvsmom

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Posted 04 December 2012 - 08:13 AM

Ditto Karen. Unfortunately it sounds like something else is happening, and since autoimmune diseases often run in groups, another AI could be the cause. :( I hope you get it figured out soon.
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#4 pain*in*my*gut

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Posted 06 December 2012 - 02:49 PM

Yikes! It sounds like your intestines were severely damaged, and that is going to take longer to heal. Six months is too soon to expect a full recovery. Are things any better, or is it still as bad as before you went gluten-free? And I also agree, you could have another issue going on besides the Celiac. What does your doc think?
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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#5 gemini1962

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Posted 10 December 2012 - 09:23 AM

Yikes! It sounds like your intestines were severely damaged, and that is going to take longer to heal. Six months is too soon to expect a full recovery. Are things any better, or is it still as bad as before you went gluten-free? And I also agree, you could have another issue going on besides the Celiac. What does your doc think?


I am having one some what normal stool first thing in the morning. After this it all goes down hill to liquid stools. The doctor said it was the worse case he has ever seen and that it was not only in the small intestines but the large intestines as well. I was in to see the doctor about a month ago and they said if I am not better in 3 months they are going to scope me again. They did test me for chrons and colitis both negative.
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#6 pain*in*my*gut

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Posted 10 December 2012 - 11:00 AM

I am having one some what normal stool first thing in the morning. After this it all goes down hill to liquid stools. The doctor said it was the worse case he has ever seen and that it was not only in the small intestines but the large intestines as well. I was in to see the doctor about a month ago and they said if I am not better in 3 months they are going to scope me again. They did test me for chrons and colitis both negative.


Hmmmm....are you sure you are strictly gluten free? I just found out the hard way that hydrolyzed Brewer's yeast has gluten when used as a flavoring in foods. Could you be getting cross contaminated in some way?

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Celiac DX 9/2011 ~ Gluten free ever since
Hashimoto's Thyroiditis 10/2011
Premature Ovarian Failure 11/2010
Rheumatoid Arthritis 10/2011
Sjogren's Disease 10/2011

"The best way out is always through" ~Robert Frost

#7 gemini1962

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Posted 10 December 2012 - 12:52 PM

Hmmmm....are you sure you are strictly gluten free? I just found out the hard way that hydrolyzed Brewer's yeast has gluten when used as a flavoring in foods. Could you be getting cross contaminated in some way?


I am buying gluten free products and when in doubt I call the manufacturer or research your site. I had my blood work done again and it is improving so it does show I am eating gluten free. I have an appointment with the diatician again today and curious to see what he has to say.
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#8 GFinDC

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Posted 10 December 2012 - 03:37 PM

Hi gemeni1962,

Do check out the newbie 101 thread for hints, it is listed below and the forums near the top. Cross contamination is a possible issue. Vitamins and meds, drinks, spices blends etc all need to be gluten-free. It is very easy to miss something when you start out on the gluten-free diet. Whole foods are better than processed foods (even gluten-free) for new people on the diet. gluten-free foods are made from different ingredients than gluteny ones. Sometimes people can have reactions to those ingredients because they aren't used to eating them. Also people's guts are changing when they go gluten-free and begin healing. They can be very sensitive for some people and simple foods that are easy to digest are helpful.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.
Get your vitamin/mineral levels tested also.
Don't eat in restaurants
Eat only whole foods not processed foods.
Eat only food you cook yourself, think simple foods, not gourmet meals.
Take probiotics.
Take gluten-free vitamins.
Take digestive enzymes.
Avoid dairy.
Avoid sugars and starchy foods.
Avoid alcohol.

Helpful threads:

FAQ Celiac com
http://www.celiac.co...celiac-disease/

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

What's For Breakfast Today?
http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?
http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?
http://www.celiac.co...ooking-tonight/

Dessert thread
http://www.celiac.co...399#entry802399

Easy yummy bread in minutes
http://www.celiac.co...ead-in-minutes/

How bad is cheating?
http://www.celiac.co...t-periodically/

Short temper thread
http://www.celiac.co...per-depression/

Non-celiac wheat sensitivity article
http://www.celiac.co...ists/Page1.html

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes
http://www.celiac.co...e-free-recipes/

Super Easy Meal Ideas Anyone?
http://www.celiac.co...l-ideas-anyone/
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Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#9 Madagascar

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Posted 10 December 2012 - 07:59 PM

just want to give you a little sympathy! i am newly diagnosed as well, but doing pretty well. i would encourage you to take enzymes to help you through this. diarrhea depletes the good bacteria in your gut and anyone can have trouble after that. i've been taking 2 lactase enzymes once a day (Schiff, Digestive Advantage Lactose Defense Formula, which is probiotics http://www.drugstore...=goobase_filler) Therapy and i also take 1 Enzymedica Digest, http://www.enzymedic...ts/Digest_Basic (a complete Enzyme formula) every time i eat. There are 3 levels of strength on those Digestive enzymes - i initially bought the Digest Gold because it was recommended on the Newbie 101 post, but they were too strong and totally upset my stomach. I went back and got the medium strength one called "Digest" there is also "Digest basic" which is the least strong.

Although newly diagnosed, i'm certain i've had this for 40+ years, just didn't know what the problem was. I've taken the lactase enzymes and the digestive enzymes for probably 15 years and they have made it possible for me to eat. literally. Life before them was eat and run to the bathroom. I'm sure you know what i mean. it's absolutely no fun.

it won't hurt you and it might just help. I hope it will. i'd also go to a very bland diet - bananas, rice - that kind of thing - until your gut calms down.
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Childhood: canker sores, zillions of cavities, and multiple dental enamel defects (not decay). Acne began at age 9, became cystic acne at 15ish, was bad til early 20's, occasional break-outs now only if i eat certain foods.
1968 - allergic to bacon (arm rashes) & orange juice; sensitive to soy
1970s - lots of digestive problems, allergy to citrus, citric acid, cinnamon, lactose intolerant, rosacea from foods
1980s - allergic to oregano, basil, thyme, pork, strawberries, paprika, smokehouse-type seasonings, peppers
1990s - discovered digestive enzymes (YAY!) and my stomach issues resolved by 90%
2012 - diagnosed with celiac via blood tests (tTG) and genes (HLA DQA1*0201: DQB1*0202)
After learning about celiac, it is obvious my mom had it (ulcerative colitis), my brother has it, and my 3 young adult children have it (2 have digestive problems + anxiety; one has DH). we all went gluten-free november 2012.

#10 gemini1962

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Posted 20 December 2012 - 09:45 AM

Ditto Karen. Unfortunately it sounds like something else is happening, and since autoimmune diseases often run in groups, another AI could be the cause. :( I hope you get it figured out soon.


They did test for Chrons and Colitis and both were negative. When you say another AI could be the cause, what does the AI stand for?
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#11 gemini1962

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Posted 20 December 2012 - 10:10 AM

just want to give you a little sympathy! i am newly diagnosed as well, but doing pretty well. i would encourage you to take enzymes to help you through this. diarrhea depletes the good bacteria in your gut and anyone can have trouble after that. i've been taking 2 lactase enzymes once a day (Schiff, Digestive Advantage Lactose Defense Formula, which is probiotics http://www.drugstore...=goobase_filler) Therapy and i also take 1 Enzymedica Digest, http://www.enzymedic...ts/Digest_Basic (a complete Enzyme formula) every time i eat. There are 3 levels of strength on those Digestive enzymes - i initially bought the Digest Gold because it was recommended on the Newbie 101 post, but they were too strong and totally upset my stomach. I went back and got the medium strength one called "Digest" there is also "Digest basic" which is the least strong.

Although newly diagnosed, i'm certain i've had this for 40+ years, just didn't know what the problem was. I've taken the lactase enzymes and the digestive enzymes for probably 15 years and they have made it possible for me to eat. literally. Life before them was eat and run to the bathroom. I'm sure you know what i mean. it's absolutely no fun.

it won't hurt you and it might just help. I hope it will. i'd also go to a very bland diet - bananas, rice - that kind of thing - until your gut calms down.


Thank you for the information, I just started taking a probiotic and immodium and the nutritionist gave me some samples of NutriSource which is a fiber supplement. I am seeing some improvement for the first couple bm's in the morning after that it is all down hill from there. I am going to try the Enzymedica to see if this helps as well. I am also doing a bland diet, just so hard to do when you are so exhausted.
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#12 dilettantesteph

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Posted 21 December 2012 - 06:59 AM

There isn't a test that shows that you are eating gluten free. There is one that shows antibodies to gluten, but they can be negative even for celiacs eating a full gluten diet who go on to get positive endoscopies for celiac disease.

Gluten free products are safe for the vast majority of celiacs. But, if you continue to have problems while eating them you may not be in that vast majority. Or you might have some other problem. While you pursue other problems through testing with your doctor, you can also try a diet of only produce and meats to see if that might help. Also look for suggestions about other cc sources, shared household, kissing, other products that may be accidentally ingested, medications or supplements.

I hope things get better.
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#13 nvsmom

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Posted 21 December 2012 - 08:43 AM

They did test for Chrons and Colitis and both were negative. When you say another AI could be the cause, what does the AI stand for?


I get lazy typing, sorry about that. By AI I meant autoimmune disorder. When I was undiagnosed, I always had "c"; the opposite problem you have. It did not improve until I was treated for hypothyroidism (which often causes "c"). Sometimes it's not the celiac disease but something else that causes symptoms. The annoying part is waiting for things to change! LOL

I am under the impression that celiac disease only attacks the small intestine, and it's the upper portion at that. I've never heard of it attacking the large intestine so my guess is that something else could be causing the damage. I hope you find answers and feel better soon!
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#14 Gemini

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Posted 21 December 2012 - 12:55 PM

There isn't a test that shows that you are eating gluten free. There is one that shows antibodies to gluten, but they can be negative even for celiacs eating a full gluten diet who go on to get positive endoscopies for celiac disease.


The DGP or AGA tests are pretty reliable, for compliance to the gluten-free diet. The OP stated that she had positive blood work for diagnosis so these tests should be reliable for compliance testing. It would be good to know what the numbers at diagnosis and re-test were, though.

Either there is another health issue going on, or another food intolerance, OR the inflammation in the small intestine extended to the large intestine. My appendix had to be removed in an emergency appendectomy when I was younger and my appendix and large intestine was inflammed. Wht would anyone's appendix or large intestine be inflammed at a younger age?
Undiagnosed Celiac but they didn't know it at the time. I think if you go long enough and the damage is extensive, it could inflame the large intestine also. I have no other intestinal issues except Celiac and lactose intolerance and I have healed amazingly well, over time. Soemtimes it just takes a really long time to heal, as those of us who have been doing this for awhile know.
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#15 gemini1962

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Posted 15 January 2013 - 02:21 PM

Thank you all for the information and the various sites with information. I have an appointment on the 23rd of this month to see the doctor. Does anyone have any suggestions as to questions I should ask the doctor since I am still having diarrhea 5 to 6 times a day? I am also getting my throid levels tested since I am really loosing my hair again and not sure if it is my thryoid or celiacs??? The longest my thyroid has been regulated is 6 months which now makes sense having celiacs with absorption.
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