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Newbee To This...
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Hello,

 

I'm new here and I'm trying to understand this stuff better. I'll tell you my story in point form.

 

Positive biopsy

Positive visual from Doctor

Celiac Blood test score over 200

I was put on a treatment for two months ( I don't remember the name of the stuff )

I have to take lots of vitumins everyday.

I have clusters of ulsers in my doadenal ( Doctor say probably lots more in deeper. )

I was vomiting blood for months ( got worse over time )

Passing blood out on my back end ( Kind of like peeing out my bum )

Doctor says we have to watch very close because this can turn bad. ( I thought it all ready was lol )

I have Ostiopeania ( bone problems ( explains my 16 bone breaks in my life ))

 

Question: I understand the bone problem but what about all this other stuff? Can anyone explain this to me a little better.

 

Thanks

John

 

 

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Hello John, and welcome to the board.

 

There is such a lot to explain, where to start?  Best for you to start by reading as much as you can on this forum, starting with the Newbie 101 thread at the beginning of the Coping section.

 

A brief synopsis.  You have been making autoimmune antibodies to gluten due to an inherited gene predisposition, which have destroyed the lining of your small intestine, allowing foods in a partially digested form to get into your bloodstream and making you very sick.  You blood test score measures the number of antibodies, and the fact that your doctor could visually see the damage rather than having to rely on the microscope looking at the biopsies means that the damage is quite severe and will quite possibly take some time to heal.

 

It would be helpful to know what the treatment was.  Was it maybe for H. pylori, for the ulcers?  These are very important to treat.  He obviously also tested you for nutritional deficiencies if you have to take lots of vitamins.  This is because the destruction of the lining of your small intestine causes you not to be able to absorb nutrients from your food and you therefore become deficient in these essential nutrients -- essential because they are required for the proper functioning of the body.  This is especially true in bonebuilding.  You are obviously deficient in Vitamin d (common in celiacs) which is a necessary nutrient for building new bone.  Without it your bones become weak and fragile.  The good news is that you should be able to build new bone with the proper nutrition.

 

The blood you were vomiting could have been coming from the ulcers if they were severe.  The passing of blood from the rectum could be from an anal fissure which is not uncommon.  Yes, passing of blood (from either end) needs to be watched closely.  Were you given a colonoscopy in addition to the endoscopy?  This would rule out any other bowel condition.

 

This is just a capsule answer to your question.  If you have more specific questions, do ask, but do do some reading on here where you will find answers to lots of questions you may have.  It is an invaluable resource.

 

Again, welcome, and I do hope you are soon feeling much better. :)

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The good in all that is that your doctor has tested you and is treating you.  Your diet will be the main issue.  Then your support in the way of nutrients, supplements, vitamins and medications. 

 

I was never tested for gluten/celiac.  I was found to have gallstones, ulcers, migraines and IBS.  Oh, almost forgot reflux.  As soon as the xrays were read and reports written, I was given many prescriptions and a xerox copy of some diet to follow.  With the bill ; /

 

Truly, I feel my main culprit was possibly a system wide yeast infection, but no doctor would consider this.  So I changed my own diet.  All organic.  Now gluten free and no genetically modified. 

 

I will not touch any grain.  Sugar.  Or those items that contain them.  No alcohol at this time, too.  Gave up cigarettes.  Switched to green teas.  It was a major life change.

 

I have been symptom free since 2007. 

 

My hope is that you give yourself time to heal.

Don't let your guard down.  It is not easy, but you are not alone.  Take care. 

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Hi,

 

Thanks for the responses. There was no sign of H. pylori, but there were clusters of ulsers in the duodenal. He says that do to the number of clusters of ulsers there are probably more further down the intestine. I think what happened with the blood coming out of the back end was due to taking ondansetron to stop the vomiting because it was out of control ( I vomited so hard before going on the ondansetron that I got a black eye. The looks I got from people were pretty funny ). He said there were no anal fissures, That was my guess as well as the thought that if the blood could not come out of my mouth it had to go else where, but I'm guessing.

 

I truly appreciate the responses, thank you both. I'm going to go read the Newbie 101 now and look into more about what you posted.

 

Cheers, I hope you both continued good health.

 

John

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Sorry I forgot to tell you. The Doctor had me on Tecta for 2 months. He said it is usually 2 weeks. He told me it didn't do anything and yet no H. pylori.

 

I don't know if that made sense but there just the points I remember. He can be vague. I kind of get the feeling he is just watching everything to see what happens. 

 

John

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Hi John,

 

Welcome to the forum!  :)

 

Sounds like you are having a bit of rough go of it.  I used to have some bleeding from the rear but not as severe as what yours sounds to be.  Have you checked all the side effects for the medications you are taking?  Some medications can have pretty severe side effects.  I like the "askapatient" web site for checking other peoples reactions to meds.

 

I was going to suggest DGL licorice and mastic gum for h.pylori but maybe that's not the problem.  H.pylori is very common tho and can move in on a damaged digestive system easily.  acid blockers are a problem  in that regard as they make it easier for H. pylori to get established.

 

Here is some info to get you started on eating gluten-free.

 

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.com/gluten-free/forum-7/announcement-3-frequently-asked-questions-about-celiac-disease/

Newbie Info 101
http://www.celiac.com/gluten-free/topic/91878-newbie-info-101/

What's For Breakfast Today?
http://www.celiac.com/gluten-free/topic/81858-whats-for-breakfast-today/
 

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Hi GFinDC,

 

Thanks for the info and links. I have done and am doing all of the suggestions except for the dairy, sugar and starchy foods I didn't know that they were no no's thanks. They are now "off" my eat list!

 

I have a couple of questions:

 

1. Which probiotics do you think are best?

 

2. Edible digestive enzymes, never heard of them. Again which do you suggest?

 

3. I had no idea there were such things as gluten-free vitamins. I looked at the label on my vitamins. I didn't see anything indicating Gluten ( wheat barley etc ). What should I look for? Is it a simple as a "Gluten Free" label?

 

Wow, the things you learn when something like this happens.

 

I love cooking. I'm no gourmet but I try to make things taste good ( the kids aren't crazy about vegetables so I have to give them a little help, the vegetables that is. A short steaming then some butter and salt and pepper ).

 

You guys are awsome! Thanks for the support.

 

John

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Hi John,

 

Shroom has given you  some great explanations and Gee Free in Dee Cee has posted all the links and info I might have added (thanks, guys!) so I'll pipe in with this:

 

(1) I have used a variety of probiotics, but this one is a good broad spectrum one. No gluten, no dairy, no other allergens.

 

 

http://www.jarrow.com/product/535/Jarro-Dophilus_Allergen-Free

 

(2) Many of us use Enzymedica Digest Gold enzymes (I get them from iherb) but I think NOW brand makes some too.. 

 

http://www.enzymedica.com/store/Digest-Gold

 

(3)  Some gluten-free vitamins: 

 

 Country Life- This entire line is certified gluten free. (I like these personally)

 Freeda Vitamins- The entire line is gluten free and vegetarian.

 Rainbow Light- This line will list “gluten free”  on the label if they can guarantee gluten-free status.

 Hy-Vee- Here’s a PDF (scroll to bottom) of their Gluten free vitamins

 Nature’s Bounty- They have listed their gluten free supplements on their website.

Puritan’s Pride

Pioneer brand

Now Brand

 

Hope this helps! Welcome! IH

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Hi John,

 

IH gave some good recommendations there.  I think any of those brands would have a worthwhile digestive enzyme also.  Bluebonnet is one other brand I like.  I use their Betaine HCL with pepsin myself.  The sugar and starchy foods are often a problem for people at first because the feed bacteria in the gut and can cause a lot of gas and bloating.  Which can be painful in a damaged gut.  Dairy is often a problem because celiac destroys the villi lining of the gut.  The enzyme that digests dairy sugar (lactase) is made by those villi.  So no lactase results in lactose intolerance and lots of gas, D etc again.  Sometimes the lactose intolerance resolves after a while on the gluten-free diet tho.  Often enough it seems like people report worsening digestive symptoms shortly after going gluten-free.  When you cut out gluten, you are changing the diet of your gut bacteria also.  So there  can be some adjustment there, which can cause some symptoms.  Plus as the gut heals there is more surface area for bacteria to cling to and multiply on.  That's all good in the long run, we need those bacteria to help with digesting our foods.  But in the short run there can be some bad strains that get out of control and very happy with the diet change.  Keeping their sugar / starch food supply low can reduce the GI symptoms.

 

The big gotchas are generally processed foods.  Gluten is put in many processed foods besides bread and cereal.  So it is good to avoid most of them if you can for a while.  After you are used to the gluten-free diet and have learned to eat safely, then is a good time to start some food experiments.  The safe way to do that is to add one new/experimental food per week, and never more than one in a day.  Otherwise it gets confusing quickly on what foods caused symptoms.

 

You can search this forum for foods and often find threads with peoples opinions of them.

 

http://www.bluebonnetnutrition.com/

 

Here's a few more threads that might help.

 

Thread For gluten-free, Dairy, Soy, Corn And Nightshade Free Recipes
http://www.celiac.com/gluten-free/topic/97786-thread-for-gluten-free-dairy-soy-corn-and-nightshade-free-recipes/

Super Easy Meal Ideas Anyone?
http://www.celiac.com/gluten-free/topic/97027-super-easy-meal-ideas-anyone/

Dessert thread
http://www.celiac.com/gluten-free/topic/93840-whats-for-dessert-tonight/page__pid__802399#entry802399

Easy yummy bread in minutes
http://www.celiac.com/gluten-free/topic/56641-easy-yummy-bread-in-minutes/

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More good info from  G F in Dee Dee there. I, too, had to forego dairy for the first few months. I added things back in slowly.

The digestive enzymes and probtioics really helped to straighten out my GI tract. I was a burning mess from mouth to rectum.

Just agony. Now, I am "right as rain" after a lifetime of so-called "IBS", ulcers and GERD, etc.. Things will turn around for you. Hang in there.

 

And..... as if we haven't given you enough to read :D

I highly recommend this book:

 

Real Life With Celiac Disease by Melinda Dennis and Daniel Leffler

 

Short, excellent articles written by over 50 celiac specialists in every arena, covering all aspects of the disease, nutrition, follow up care, probiotics, safe foods, even communion wafers, etc.

 

I wish I had known about it the first year (it would have saved me a lot of research time) but then again, I may not have 

learned so much about the GI tract, bad gut bacteria and how to fix pesky poop problems.  :lol:

 

As you can see, nothing is TMI here, I'm afraid.

 

Anything else you need, give a holler.

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To all of you,

 

What can I say but thanks your very helpful. I'm sure I will have more questions as I read through everything.

 

I can't believe all of the helpful friendly advice all of you have given me, Amazing! I hope one day I can be of assistance to all of you.

 

Thank you all very much!

 

John

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    • I had a negative biopsy and was still diagnosed with Celiac. My GI ran a bunch of tests looking for the cause of my 15+ years of diarrhea and the only thing that came back positive was the entire Celiac panel. All very high. So he performed an endoscopy with biopsy. The biopsy was negative. So he ordered a genetic test. When that came back as "high risk" he decided a trial gluten free diet was in order. After 8 weeks my symptoms resolved and my antibodies were back to normal. Since then, follow up testing had shown I have osteoporosis. I am a 40 year old male.  So yes, you can definitely still have it and have significant damage with a negative biopsy. 
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