• 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.

Kiahrea
0

19 posts in this topic

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

0

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

0

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?

0

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!

0

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.

0

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

0

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.

0

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

0

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

0

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

0

Share this post


Link to post
Share on other sites

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.

0

Share this post


Link to post
Share on other sites

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

0

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!

0

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)?

0

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)

0

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?

0

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.

0

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

0

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!

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
      106,466
    • Total Posts
      930,721
  • Member Statistics

    • Total Members
      63,896
    • Most Online
      3,093

    Newest Member
    LMS
    Joined
  • Popular Now

  • Topics

  • Posts

    • KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust.  By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,  
    • Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms---   My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP.   My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"...   I have a follow-up with the GI in 3 weeks.   Wondering about any help?
    • DH wasn't linked to celiacs until 1967 from my research...
    • I was at a used book sale yesterday and happened to see an old dermatological textbook.  Of course the first thing I looked up was dh just to see what it had to say.  What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line.  The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember.  Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back.  Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this.  That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.
    • Feeneyja, This will be a little long but I will  try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.” And why I believe in many cases Pellagra goes undiagnosed today.  Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer’s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin.  All B-Vitamin's help your stress levels.  IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful.  Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
  • Upcoming Events