• Join our community!

    Do you have questions about celiac disease or the gluten-free diet?

  • Ads by Google:
     




    Get email alerts Subscribe to Celiac.com's FREE weekly eNewsletter

    Ads by Google:



       Get email alertsSubscribe to Celiac.com's FREE weekly eNewsletter

  • 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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes

Rate this topic

Recommended Posts

Hi, thought I would share this with those of you who have diahrea. I have been gluten-free for two months now and still have diahrea, sometimes 8 times a day. I have made very little progress in the last few months in terms of this symptom. Here's what the GI said today:

Having D does not mean you have been contamininated nor does it mean you are not healing nor does it impair healing. He said that when you have severe damageand eat fat, you overload your system and it "floods" (D). Interestinly, the times that I noticed improvemtns in my bowel habits have been the times I was adhering to a whole foods diet. I lost weight eating this way and on the advice of my dietitian, i increased the fat in my diet. The D came back in full force! I know from reading other posts that many of you have also been concerned about chronic D. I'll give you the same advice he gave me..if at the 4 1/2 month point your D is still frequent, contact your GI and they will start to investigate. In his opinion, D means that you are not yet internally healed and by 3/4 months symptoms should be improving. So don't worry, D does notnecessarily mean gluten. And yes, Imodium is fine to take. I spoke to someone a week ago and thaey had stage 4 damage, her diahrea didn't stop for six months.

I would appreciate any of your perspectives.

Also, he said that antibodies don't decline until the three month point and then it takes a while for your immune system to readjust itself.

Ally

Share this post


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


The first question I have is have you been completely gluten free? Have you checked lipsticks, lotions, shampoos? Anything that has a possibility of getting into your mouth needs to be checked. Have you got a new toaster? Cleaned utensils and pans you cook with?Wash your hands after handling anything containing gluten?

It is true it does take time to heal. I started seeing a difference after 3 months and got back to normal a few months after that.

antibodies decline when you get off of gluten...thats why you have to be on gluten when you test for celiac

Share this post


Link to post
Share on other sites
I spoke to someone a week ago and thaey had stage 4 damage, her diahrea didn't stop for six months.

Not sure what you mean by this, you can have certain stages. How do we find out what stage we have?

Share this post


Link to post
Share on other sites

If you have had a biopsy done,and it shows 'villous atrophy', the labs categorise what level of damage,stages 1-4 I think.

Doctors however do not usually tell us 'mere mortals' what stage it's at.

My husband was told he had 'partial villous atrophy',but I have no idea what 'stage' the damage was.Maybe at the next appiontment we will ask!

Share this post


Link to post
Share on other sites

Yes, there are four stages. Stage three is partial to sub-total damage. Stage four is complete /total damage.

Share this post


Link to post
Share on other sites
Ads by Google:


Please tell me whether or not you are eating dairy? The villi damage you refer to would have damaged the villi ends of the small intestines that are used to metabolize dairy and the main symptom of dairy intolerance is diarrhea (bloating, pain..). You might want to go off dairy for a while too, but, make sure you take a good calcium supplement like Citracil which can be taken on an empty stomach. Only 500mg can be utilized at a time so space them out throughout the day and take the recommended amount (I take 1500 to 2000 to catch up my skeleton which is low from years of intestinal damage).

Leslie

Share this post


Link to post
Share on other sites

I was tested for lactose intolerence around the same time as my biopsy and it came back fine. May I ask your age and the number of years you went undiagnosed. I am going for a bone scan in 6 weeks and I am worried I have osteoporosis.

Share this post


Link to post
Share on other sites

Hi Ally- Osteopenia and osteoporosis is present in 50-100% of Celiacs but I couldn't find the medical article right now. It is at brain.hastypastry. but they are down for a day or two more. Another article said 25% of those with lactose intolerance will have Celiac and the another that weeks after going gluten-free the lactose intolerance will go away in 25% of those Celiacs with lactose intolerance. I also read that it is being considered to recommend a Celiac blood panel screen to all patients who test osteopenia or osteoporosis. I don't remember the % that test positive from that study but think it was around 20%.

I am 48 and was tested at my own request years after a doctor commented that from looking at my chest x-ray she could tell that I had fractured my back. That had happened teaching skiing when I was 45 and it wasn't a really hard fall. I personally think all women should have a bone density x-ray at perimenapause as they lose 20% bone mass in the first 5 years after menapause. Since going gluten-free and taking calcium supplements my back and neck pain have gone away and I feel stronger.

If you have a low bone density from Celiac disease it will improve dramatically no matter what age you are. Just make sure you are taking enough calcium. There is something about Celiac caused low bone density that makes the bone take up calcium as soon as the intestines begin to heal. But you weren't lactose intolerant and the odds are in your favor that your bones are just fine! Let us know how you are doing and I'll add those web links next time.

Leslie

Share this post


Link to post
Share on other sites

If you are continuing to have diarrhea you might want to investigate whether or not you have an infection or parasites. :blink: My Doc has tested me for this and I find out the results tommorrow.

Take care,

June

Share this post


Link to post
Share on other sites

I was tested for infection and parasites at diagnosis as well. I'm not sure what the problem is! Today is a bad day...I'm imagining all kinds of things - refractatory celiac disease, cancer. I read earlier today that GI symptoms should settle in TWO WEEKS. As soon as I read stuff like that I feel soooo depressed and anxiuos.

Ally

Share this post


Link to post
Share on other sites


Ads by Google:


Some of the lucky guys start to feel better after 2 weeks gluten-free-but for alot it takes a longer.

I do sympathise with you as my husband has had a similar problem.

After finding out what was making him feel so bad,we all imagined that he would start to feel better after a couple weeks gluten-free.

We suspect that my husband has had celiac disease undiagnosed since childhood(he's 40 yrs now)-so to be fair there's alot of damage to undo.

My husband has had continual diarrhea-having cut out gluten & dairy,and has found it impossible to put on weight.

A secondary biopsy done after 6 months gluten-free showed a very slight improvement to his villi.I was convinced it was cancer as he was still so ill-so was suprised (& relieved)when it showed some improvement.

However,docs decided he needed help to speed up the recovery so is currently on steriods.(Prednisone-down to 15mg a day)

It has done wonders for his appetite and can eat anything(excluding gluten of course)without any problems.Diarrhea and pain have stopped too.

My husband also takes calcium supplements, folic acid,and multivitamins.He hasn't had a dexa bone scan yet.

Anyhow,what I wanted to say is,I too was imagining the worse case scenario-when there could be other things slowing your progress.

I hope you feel better soon,& get some answers.

Share this post


Link to post
Share on other sites

Thanks for the support and info. How long does he take the seroids for?

Share this post


Link to post
Share on other sites

My hubbie is 2weeks into a months course of steriods.He see's his gastro doc after a month,by which time he will be down to 10mg.

I suppose the docs will assess how much weight he's put on,as to whether he can come off them.

Just to see him want to eat is fantastic,(I think after years of pain he unconsciously avoided food).Trying to cram as much in as possible!

Good luck!

Share this post


Link to post
Share on other sites

Do you know how much damage he had at the time of diagnosis (stage 1-4)?

Share this post


Link to post
Share on other sites

Stage three I believe(partial villous atrophy).

If you could have seen how ill he was,you'd be suprised he had any villi left!

He also unfortunately has neurolgical symptoms,(waiting to see neurologist)

Share this post


Link to post
Share on other sites

It sounds like he was very ill. As I mentioned I also had stage three. I was working, running 50K (about 35 miles per week) and taking a night class. The only reason I went to the doctor was to ask if I could take immodium on a regualr basis to control the D I was having. I must admit that for six months prior to diagnosis I was feeling more mentally and phsycially fatigued but not to the point I couldn't do what I had been doing. It's so odd that two people can have the same disease and to the same extent and have symptoms soooo different. What neurological symptoms does he have? What did "ill" look like for your husband?

Share this post


Link to post
Share on other sites

Hi Ally,

to describe my husbands neurological symptoms,they are;

Numbness,pain,tingling,burning pain in feet and legs.

Soles of feet hurt to stand on

Extreme difficultly getting to standing from chair(although he wants to get up nothing happens,takes about 5 mins)

Spatial awareness problems(bumping into things-like he's drunk!

Terrible headaches

Dizzy spells and balance problems

'freezing up' as day goes on-(he says it feels like he slowly being paralysed.

Shuffling gait(can't pick feet up)

Needs to sleep at least 16-18hrs a night

Constant 'brain fog'

To describe how he looks on a bad day,

I suppose like an emaciated little old man(he's only 40)as he can't seem to stand up straight,and shuffles.

Or a terminally ill cancer patient-people have asked me if he has cancer.

Not a good look,-still ,hoping the steriods will help with him gain some weight.

The battle against celiac disease is not over yet,but he's heading in the right direction.

Share this post


Link to post
Share on other sites

That totally sucks!! You both must be very frustrated by now. Thank goodness he is starting to improve a bit. Will these neuro symptoms improve once the celiac disease is under control.? How do YOU cope with all this?

Ally

Share this post


Link to post
Share on other sites

Thanks Ally.

I can't tell you how frustrating it's been!.You just have to get on with it though.Whilst on steriods all of my hubbie's symptoms have quietened down,but I don't know if the neuro symptoms will return.Suppose we'll have to wait until we've seen the neurologist.

-Will keep you all posted on his progress-cases like his seem so rare.

Hope things improve for you soon!

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
      108,923
    • Total Posts
      943,521
  • Member Statistics

    • Total Members
      67,131
    • Most Online
      3,093

    Newest Member
    KLove
    Joined
  • Popular Now

  • Topics

  • Posts

    • Hey Deb, In theory (based on some studies), your small instestine should heal pretty fast (within weeks), but often there is collateral damage that can take longer (like your bone pain).  For me, personally, a gluten exposure can set me back three to six months.  My antibodies can last over a year.  And worse, I now developed autoimmune gastritis and hives.  Yikes!   I had  some hip and rib cage pain when I was first diagnosed.  Two months later I fractured some vertebrae.  I had been undiagnosed for so long, that I developed osteoporosis.  I assume that once on a gluten free diet, your pain should diminish based on a strict adherence to the diet and  your previous experience.   I hope you feel better soon!  
    • I know-pretty dumb. I'm usually very careful. I didn't check into it. Thanks for reply. DebLee
    • LexieA, This thread might help you. You say you never have "heartburn/GERD". You can have something called Silent Reflux. It  could also be NERD. some of these links are in this thread but I will post some releavent information in this reply as well. here is a good overview of the difference in this fox news article. http://www.foxnews.com/health/2012/11/13/gerd-or-nerd-new-type-acid-reflux-doesnt-respond-to-drugs.html but if your throwing up it is probably from Bile Relfux. . . . instead of acid reflux. I actually wrote a blog post on celiac.com about these conditions. the NYTimes article called Bile Reflux a "Shadowland" in Medicine and part of the reason for the title of the post. here is the NYtimes article about some of the issues you are describing. http://www.nytimes.com/2009/06/30/health/30brod.html throwing up is actually a protective reaction. and this normally protect us from poison's or food poisioning etc. but when our biofeedack loop is broken down like having bile in the stomach instead of the small intestine . . . it can be hard to break this cycle. The green portion is probably the bile portion. It is actually very caustic as Plumbago pointed out.  this would/coul scald our insides (lower GI/Small Intestines). Normally stomach acid is neutralized by bile after it leaves the stomach . .. not while in the stomach. I wouldn't never recommend anybody do this on purpose . .. but if you are already puking your food up then simply buy a pH test kit. testing your food/chyme/puke (food outside the body) you will quickly get an idea of how acidic/basic your food chyme (digested food) is. It will almost be a pH of 4.0 or more. the paleo nurse explains this well why strong stomach acid is important to your health. http://thepaleonurse.com/the-truth-about-stomach-acid-why-low-stomach-acid-is-jeopardizing-your-health/ quoting the paleonurse. "In the infinite wisdom of the human body, the stomach was designed to produce the acid that is necessary for proper digestion of food.  When functioning properly, the parietal cells of the stomach secrete hydrochloric acid that bring the stomach pH to a range of approximately 1.5 to 3.0" if it is a higher pH than this you can benefit from taking BetaineHCL to restore your stomach acid to more natural level. . . especially if you are not already taking PPI's since a proton pump inhibitor is lowering stomach acid. .. . by their very ability to cut off almost all stomach acid production. **** this is not medical advice I only know taking powdered stomach acid (BetaineHCL capsules)  helped me. I was not barfing my meals though. . . so your experience my be different. Maybe Ennis_tx will comment because he has some of the same symptom's/issues. But if I was puking I think I would be curios to know what my pH really is? And not Assume? anything at this point. If you test your stomach pH with easy to buy pH strips you will know whether it really is high pH (low stomach acid or a little stomach acid as your describe it) or low pH (really high stomach aid) that is causing the issue's. Once you know for sure you  will know who to go about correcting it. Supplementing with BetaineHCL is fairly harmless . . .unless you have an ulcer. And you will/would probably know it instantly if you take some BetaineHCL and it feels like someone is putting out a cigarette in the middle of your stomach.  It is acid burning your sore/ulcer. thankfully eating protein/food quickly neutralizes/raises stomach acid especially when taken with a glass of water. staying hydrated with a meal also helps improve digestion so be sure to take some water/drink like a tea or juice etc. for example if you want to the BetaineHCL to work properly. Milk has the opposite effect.  If you feel a burning milk can coat the lining of your stomach helping to erase/ease the effect of strong acid. And why people who eat hot **** five alarm peppers aka known as Hot heads keep milk close by if they need to dampen the fire in their stomachs from eating too many peppers. . . . and drinking water can aggravate this practice of eating the hottest peppers you can find. I hope this is helpful. I have rambled on long enough. be sure to read the sickboy user in the medhelp thread of how he helped his GERD/bile reflux. here is medhelp link for easy reference included in the "silent reflux" thread if you haven't read it yet. https://www.medhelp.org/posts/Gastroenterology/UNCONTROLLABLE-BILE-REFLUX-PLEASE-HELP/show/738242?page=1 he was suffering for 5 years and got better so don't lose hope. It can seem very daunting but people on this board do get better. we have used different methods but people do get better. again this is not medical advice just things that have helped me. good luck on your continued journey but it is not a long way back if you know the way. 2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort; 4) who comforteth us in all our tribulation, that we may be able to comfort them (sufferer still suffering)   which are in any trouble, by the comfort wherewith we ourselves are comforted of God.” posterboy by the grace of God,    
    • LOL sorry but really? You trust that, dominos, papa johns, and pizza hut ALL say they can not 100% guarantee their gluten-free pizza are celiac safe. THEY USE the same prep areas, same ingredient bins, same ovens and in many cases the same cutters and spoons used to spread the sauces and cut the pizza. I doubt the employees would even bother changing gloves between pizzas during rush.   Seriously if you want a gluten free pizza....gut a premade one in the freezer section from UDI, Dayia, RealGoodPizza or a crust from cappellos or califlower foods and make your own....Here please save yourself here is a list. BTW Pizza hut uses UDI crust and just tops them with their sauce etc....CCing in most cases and delivering them. Also the REAL good pizza will mail you cases of their pizzas fully made. Califlour foods and capello will mail you empty crust by the case. SO you can order them if  local stores do not carry them.


      http://udisglutenfree.com/product-category/pizza-crust/
      https://daiyafoods.com/
      http://iansnaturalfoods.com/products/gluten-free-cheesy-french-bread-pizza/
      https://www.geefree.com/collections/all/products/cheese-pizza-pocketshttps://cappellos.com/collections/pizza
      *^Grain Free Pizza crust to make your own with using eggs, coconut and arrowroot for a base crust blend. The Naked pizza crust is dairy free. Order frozen by the case and they ship them to you.
      https://realgoodfoods.com/productpage/
      *^Grain Free Pizza They use Dairy Cheese blended with chicken breast to form personal pizza crust. You can order them frozen and shipped to you. NEW PRODUCTS they do Enchiladas NOW
      https://www.califlourfoods.com/collections
      *^ This is the only one I buy, grain free, low carb crust, and the plant based one is great, NOTE these make a New york style flat crust, I use 15 min prebake before adding toppings to make them extra crispy
      http://glutenfreedelights.com/our-sandwiches/
      ^Gluten free hot pockets? YES they make them for when you need the old instant hotpocket, odd craving but I know they hit sometimes.
      CRUST MIXES Grain free
      https://www.simplemills.com/collections/all/products/almond-flour-pizza-crust-mix
      https://julianbakery.com/product/paleo-pizza-crust-mix-gluten-grain-free/
  • Upcoming Events