• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Newbee To This...
0

11 posts in this topic

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

 

 

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


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. :)

1

Share this post


Link to post
Share on other sites

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. 

1

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites
Ads by Google:


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/
 

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

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/

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      106,784
    • Total Posts
      932,407
  • Member Statistics

    • Total Members
      64,262
    • Most Online
      3,093

    Newest Member
    plimpyanp
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hello and welcome I'd just echo CyclingLady - do you need to put yourself through this? There are lots of good reasons for pursuing a diagnosis but amongst the strongest are helping you to 'keep honest' on the diet or ensuring that your not denying yourselves a lot of foods for good reason. Neither of these apply to you and so I'd have to ask what you have to gain by putting yourself through it?  Oh and: Me too, but every so often I fall of the wagon into a gluten free cheesecake or similar Best of luck!
    • My own bugbear is that in dismissing the fad diet journalists will typically reference Celiac but will often say that only Celiac patients should be following the gluten free diet. Whatever the consensus medical opinion of NCGS, it's a fact that there are many people who are not diagnosed Celiac but who have been advised by their doctors to follow a gluten free diet. That distinction is typically too subtle for such articles and they therefore help to support the idea amongst the wider populace that if you're not celiac you can eat gluten and if you're avoiding it your either deluded, a chronic attention seeker or jumping on a bandwagon. A reductive and potentially harmful generalisation. 
    • Hello,  Celiac Disease and alcohol consumption cause malabsorption that can lead to vitamin deficiencies. Nutrition has a part to play in connective tissue disorders like arthritis, Sjorgren's, Ehlers-Danlos, and polychondritis.  Here's an article about EDS and nutritional therapy. http://www.chronicpainpartners.com/nutritional-therapeutic-strategy-for-ehlers-danlos-syndrome/  Vitamin D is really important in controlling inflammation.   https://www.ncbi.nlm.nih.gov/pubmed/23830380 You might consider checking for vitamin deficiencies at your next doctor's appointment.   You might want to look into a low histamine diet and mast cell activation syndrome.  I found going on the Autoimmune Immune Paleo diet, a low histamine diet, and a low sulfite diet simultaneously helpful.   The low histamine diet doesn't allow anything fermented. If your reaction to the fermented cabbage is "ugh," it's your body telling you not to eat it.   Cabbage, fish oil, and wine are high in Sulfites.  Metformin is a sulfa drug.  Your body might be inflamed because of a Sulfites hypersensitivity that may occur with Celiac Disease.   These are things I found helpful.  It took several months to figure out what works for me.  I'm doing much better now.  Like CyclingLady, I "eat to my meter" and don't take medication.  I hope this helps us on our journey to wellness.
    • Well first things first, I always read your posts with interest, you have gone the extra mile for answers, put the intellectual work in and crucially kept a rational and grounded perspective throughout and if anyone deserves them you do.  Sadly of course I don't have any,  so I'll simply send my sincere best wishes across the Atlantic.  I really do hope you find your answer.  On this: I tested negative for celiac and my endoscopy didn't show villi blunting. I do however definitely react to gluten in all sorts of ways. So I'm in the nebulous NCGS group, a condition that most of the world seems uncertain even exists or if so questions its relation to gluten.  I wanted certainty and answers and I never really got them. I've come to accept that it's an imperfect world and this is still in medical terms an imperfectly understood area. I've had to park the question of whether I had celiac but it wasn't picked up (there were some flaws in the diagnostic process) or early onset celiac or NCGS or its really fodmaps and I'm working on a false correlation or it's NCIS, no, CSI New York, etc etc. In the end I was exhausted, sick of feeling ill and had proved to my own satisfaction that gluten was a problem and I decided to leave it at that. It's not ideal by any means, but, hey, whaddya gonna do?  There are things I know about my own condition that I can't necessarily demonstrate or have validated by a test. It is, by definition, anecdotal at best, but I'll offer it in any case. One of them would be the recovery on the gluten free diet. This was very much a matter of time. I did have some very quick responses, within a few days for instance for an improvement in brain fog, anxiety etc. Some of the weirder neuro symptoms seemed to take much longer and although the endoscopy was negative for villi damage I can't help thinking that malabsorbtion may be an explanation for the time some of these longer term issues took to resolve.  Weirdly some of those neuro symptoms, say the muscle twinges, that took a long time to resolve now seem to trigger occasionally I think in response to minute cross contamination issues. I have no idea what this means, maybe they require the least amount of gluten present to present so they were amongst the last to stop? I know just a few days ago I was noticing an errant muscle repeatedly twitching and I started thinking about the bbq I'd just risked using... None of which of course proves anything or gets you further down the road. I do think however that this: is a good idea and I'd encourage you to push that limit back from the end of summer to a date at least 6 months and perhaps longer away (I'm thinking 12). The gluten free diet is a pain in the arse but it's healthy (or it is if you make it so) and aside from a slight increase in expense it's increasingly straightforward to follow. Go gluten free, apply just the same rigour in pursuing the diet that you have in looking for answers. Do the food journal. Do the whole foods for 3 months, cross contamination procedure with pans, check toothpaste etc.  In short, proceed as if you'd had a positive celiac diagnosis and try to eliminate all doubts. For X many months, live as if gluten free isn't a choice, but a necessity.  It makes it easier believe it or not. Give the diet sufficient time and you will be running perhaps your last test by yourself, for me that was the most significant test of all.  Oh and on this: I learnt, at great personal cost in terms of the sheer misery I went through that my view of health professionals was juvenile and unhelpful. The unquestioning belief that as children we invest in doctors, nurses etc can translate into an over investment of trust to a level which would not be the case in any other comparable scenario. You go to them at your weakest moments, in search of validation, comfort, solutions etc. and if you have a bad experience the first impulse is to blame yourself or question your own experience. Well I'm way past that now. Just like any other walk of life there are good, bad and lot's of indifferent people working within. I've had some great experiences but I've also had some awful ones and indeed just a few days ago I had one so bad that for the first time in my life, I lodged a complaint. Please understand as a British person this is very unusual indeed  It was a horrendous meeting and I was treated in such an appalling way that if I related it here you may not believe me. A couple of years ago it would've destroyed me. Now I just shrugged it off, then realised that if I allowed that behaviour to pass unquestioned I'd be doing a disservice to the next person who had to suffer that kind of treatment. You've shown on here your an intelligent person with a fully justified and admirable engagement in looking for answers. If your doctors aren't picking up on that the fault lies with them. tldr **** them. Best wishes from the sunny UK  Matt  
    • I think the gripe with this sort of article is that it's not telling the right story. When you write anything, you have a choice about whose story you tell and the consequences of it.  While such articles are factual in the sense that objectively, a GFD is worse than a similar regular one, the focus of these articles undermines the struggles of those who must be gluten-free while also not really giving any information that is likely to result in changed behaviour. All this sort of article does is justify the anti-gluten-free circlejerk. I think many of the journalists here think they're on the side of people with celiac disease because they're underlining that the fad diet is dumb/pointless/harmful/whatever. While this may be true, the message the reader remembers is this: the GFD is frivolous. It doesn't matter if there's a line in the article that says something about how the GFD is a medical necessity for those with celiac disease. People don't remember the asterisk in the article. All they remember is that the GFD is for idiots.  What would be valuable and useful is discussing celiac disease - symptoms, longterm consequences etc. and how strict those with celiac disease must be with the GFD in the context of this research. This will do a better job of convincing people that the fad diet is dumb, but do so in a responsible way that doesn't undermine the real problems faced by those with celiac disease or other medical conditions. Plus, the increased awareness might make someone realize that they should get tested.
  • Upcoming Events