Diagnosed 6 Months Ago Still Having Problems

[gemini1962]

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?

[kareng]

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.

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[nvsmom]

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.

[pain*in*my*gut]

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?

[gemini1962]

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.

[pain*in*my*gut]

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?

[gemini1962]

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.

[GFinDC]

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/

[Madagascar]

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 Open Original Shared Link) Therapy and i also take 1 Enzymedica Digest, Open Original Shared Link (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.

[gemini1962]

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?

[gemini1962]

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 Open Original Shared Link) Therapy and i also take 1 Enzymedica Digest, Open Original Shared Link (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.

[dilettantesteph]

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.

[nvsmom]

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!

[Gemini]

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.

[gemini1962]

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.

[Ninja]

This might have already been mentioned, but make sure you get copies of all of your test results. It's nice to have them so you can compare numbers post diagnosis. It's also nice to be able to see exactly where your numbers fall within the range of "normal." Sometimes what the lab says is normal, isn't actually normal for you. A good example of this is the TSH test for thyroid: many people experience symptoms of hypothyroidism after their numbers hit 3.00+, but many labs consider numbers up till 5.00 to be normal.

Maybe you could get copies of the reports from the endoscopy/colonoscopy? If you have any questions you could post the results here: there are many knowledgeable people around this forum who can help decipher the medical jargon. :-) Did your doctor test for vitamin deficiencies? Digestive enzymes and probiotics also helped me A LOT. Make sure your probiotics have more than just 1-3 strands of good bacteria! Culturelle makes a GFDF version that helped me also.

Good luck and hugs!

Edited to add: Many of us need to go dairy free for a little while (typically 9-12 months) to aid in our healing because Celiac can cause a secondary lactose intolerance from the damage to the villi (the tips produce lactase, which is what helps us digest lactose). Also, have you been avoiding oats...even gluten-free oats?

[Chaff]

For the hair loss, there's always the possibility of iron being involved. Checking that in addition to whatever else you're testing might be good. I have iron overload AND Hashimoto's, so the symptoms overlap. Anyway -- a simple iron panel (serum ferritin especially) can rule out iron issues.

If you haven't been checked for SIBO, it might help. But that wouldn't apply to all your issues -- still, nice to rule out.

I'm confused about Crohn's. I didn't think it was an easy thing to rule out through basic testing -- I thought it was more difficult to diagnose than that. Have you considered posting your issues on the Crohn's forums to see what they think?

Other than that, a lot of things can cause chronic diarrhea, but if nothing is determined I think they label you IBS. You could also look into what IBS folks tend to get diagnosed with once they get a more firm one and explore those.

Also, there is the possibility of severe food allergies or intolerances. Fructose malabsorbtion can cause diarrhea, for example. It's unlikely to be giving you this level of diarrhea, but then again I don't know your diet -- a juice fast would give me severe GI issues. Anyway, something to consider if you're looking for ideas.

Good luck, and please keep us posted.

[gemini1962]

This might have already been mentioned, but make sure you get copies of all of your test results. It's nice to have them so you can compare numbers post diagnosis. It's also nice to be able to see exactly where your numbers fall within the range of "normal." Sometimes what the lab says is normal, isn't actually normal for you. A good example of this is the TSH test for thyroid: many people experience symptoms of hypothyroidism after their numbers hit 3.00+, but many labs consider numbers up till 5.00 to be normal.

Maybe you could get copies of the reports from the endoscopy/colonoscopy? If you have any questions you could post the results here: there are many knowledgeable people around this forum who can help decipher the medical jargon. :-) Did your doctor test for vitamin deficiencies? Digestive enzymes and probiotics also helped me A LOT. Make sure your probiotics have more than just 1-3 strands of good bacteria! Culturelle makes a GFDF version that helped me also.

Good luck and hugs!

Edited to add: Many of us need to go dairy free for a little while (typically 9-12 months) to aid in our healing because Celiac can cause a secondary lactose intolerance from the damage to the villi (the tips produce lactase, which is what helps us digest lactose). Also, have you been avoiding oats...even gluten-free oats?

Thanks for the good information, I do get copies of my lab reports on my thyroid. I bounce back and fourth every 3 to 6 months. I had half of my thyroid removed years ago and have never been regulated. I may have had celiac for years and did not know until recently. Maybe once I get the celiac under control the issues of absorption will help with my medications absorpting properly. My Iron was low and it is now normal I will have to see if they checked other vitamins. I recently started taking a probiotic will have to look into digestive enzymes. I am avoiding all oats as well.

Thank you for your suggestions and especially the hugs!!!

[Madagascar]

it sucks, doesn't it? i'm sorry you're still having such serious problems.

i can't say enough good things about probiotics and the digestive enzymes - seriously. i would go get those today and start taking them! personally, i'd also take some immodium and get the diarrhea stopped. that is so debilitating to your body. any vitamins you are taking, or nutritients from your food are not being absorbed as long as you've got that going on.

as far as your doctor's appt, i think i would ask to be tested for the antibodies produced if you have Hashimoto's - an autoimmune disease where the body attacks the thyroid. just having the regular overall thyroid test isn't good enough. I've been wondering about it for myself and it sounds like you need the separate T3 and T4 numbers, as well as the overall and the antibodies. If you have Hashimoto's (celiac disease increases the risk of having it), your thyroid numbers can go up and down, from underactive to overactive, and one test might not catch the abnormalities. i'm going to ask to get checked for the antibodies.

my mom had ulcerative colitis, and no doubt celiac, although she's passed away before we learned about all of this, and she had her colitis under control for the last 10 years of her life. she attributed it to eating about 2 cups of Nancy's Yogurt every day. She did take her meds, but she'd had colitis for 40 years and the meds never controlled it before she started the yogurt. it's got active probiotics - you don't have to eat the yogurt if it bothers you, you can take a probiotic. yogurt has almost no lactose because it's already broken down, but if you are sensitive to casein, the milk protein, that might be a problem.

i was reading a commentary a few days ago on a medical journal that said that probiotics have healing effects on the gut. perhaps it would help you.