Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Does This Sound Like Celiac? Any Advice?
0

5 posts in this topic

Hi Everyone,

I'd first like to thank everyone for spending so much time and research into putting together such a high quality forum.

I've been feeling uncomfortable for years and have only found some relief in one thing -- fasting or just eating very little which is unfortunately pretty unsustainable...

Since my early 20's I gradually developed symptoms of bloating and distension along with moderate constipation. Having a bowel movement or passing gas seems to reduce the pressure to some extent but it's virtually always there (morning/afternoon/night -- doesn't seem to matter). I've been taking miralax for a few months which seems to help the constipation but does little to help the bloating/distension (i.e. I'm 6'2'' at 170 lbs, 12% body fat and have to wear 36" waist pants to avoid putting any unbearable pressure on my abdomen).

In trying to figure out what's going on with me, I was tested for Celiac disease and had sky high serology (i.e. ~170 on a tTG blood test where 30+ was a strong positive) and positive pathology (Marsh II). After my endoscopy, I was very strictly gluten-free for a year and I felt absolutely no different even though my tTG dropped gradually to around a 40 on the same exact test kit. Since I felt no better after a year of being very strict (barely ever ate out except at restaurants which specifically cater to celiacs and ate salads the rest of the time out or prepared my own food), I gave up on the diet. Since I started eating bread again, I really feel no different than I did that year. I essentially thought -- if I'm going to feel miserable, I might as well not deny myself something which seems to have no impact on me. My serology is now high again (I had it tested out of curiosity) though I feel no different.

I've tried zelnorm, amitiza, prilosec, activated charcoal, variety of enzymes, tons of exercise (aerobics, pilates), lactose free, soy free, a variety of antibiotics and even a 3 week vivonex diet for possible overgrowth.

--> Is there something I'm missing here?

--> Is this symptom of a relatively constant bloating sensation with distension common for celiacs? Is it a function of constant inflammation or more just my abdominal muscles having been retrained as a function of my gut generally being pretty gassy?

--> Is my only real option to go gluten-free again and hope for the best? (not sure I can handle that again unless I had some real confidence it would help me)

thanks guys

0

Share this post


Link to post
Share on other sites


Ads by Google:

Ttg is very specific for celiac disease. With such high numbers you really NEED to be on the gluten-free diet. You might not feel any different, but if you don't stick with it you're setting yourself up for some pretty scary health problems... more autoimmune disorders, cancer, etc...

The first idea that popped into my mind is that you have more than one food intolerance. Corn makes me just as gassy, bloated, and constipated as gluten. My son has terrible reactions to all dairy products (due to the proteins, like casein, not just lactose). Corn is in EVERYTHING. I had to cut 99% of processed foods out of my diet and stop eating at restaurants (I've discovered that I'm really sensitive to contamination), but the payoff is that I feel great :) I never thought I would get rid of the bloating. People used to ask me if I was pregnant all the time... years before I was.

A couple of other things you might consider:

1. Check your TSH. Constipation is one of the classic symptoms of hypothyroidism. This disorder is more common in celiacs and vice versa.

2. Take a magnesium supplement. Too much will give you diarrhea, but the right dose for you could get things moving again. it's very common for celiacs to have vitamin and mineral deficiencies.

3. Eating acidic foods with your meals (lemon juice, vinegar) or taking an acid supplement (Betaine HCl). Proper digestion needs to start in your mouth and your stomach... otherwise, you can end up in a situation where food is just rotting in your intestines (causing bloating and gas) instead of being digested. Rotting food also gives off toxins.

Welcome to the group, by the way! This is really a GREAT place for support. Anything you need... a place to vent, recipes, advice on reading labels... just ask.

0

Share this post


Link to post
Share on other sites

Hi. :)

--> Is there something I'm missing here?

--> Is this symptom of a relatively constant bloating sensation with distension common for celiacs? Is it a function of constant inflammation or more just my abdominal muscles having been retrained as a function of my gut generally being pretty gassy?

--> Is my only real option to go gluten-free again and hope for the best? (not sure I can handle that again unless I had some real confidence it would help me)

A year is a long time to see no improvement but it can take longer to heal than that. :( For many people dairy is also and issue and may prevent healing, have you continued to eat dairy? I see you tried lactose free but does that mean you continued to consume dairy at all, cheese?

When your doctor did these tests did he also check your vitamin and mineral levels?

Bloating says your digestion is not working well, there are digestive enzymes that some take but I do not so I cannot recommend any. I drink fresh lemon juice in hot water every morning, helps the liver, and eat grated beets with apple cider vinegar or lemon juice before any meal that contains protein, this supports the bilary system and for many Celiacs our gall bladders are challenged.

My serology is now high again (I had it tested out of curiosity) though I feel no different.

EEK! This is not good, while you may feel no different damage may be done.

How long has it been since you started eating bread again?

I was on a strict gluten and dairy free diet for two and a half years with some improvements but certainly not healed, I do understand how incredibly frustrating it is to do the diet and not see improvements. :)

0

Share this post


Link to post
Share on other sites
A year is a long time to see no improvement but it can take longer to heal than that. :( For many people dairy is also and issue and may prevent healing, have you continued to eat dairy? I see you tried lactose free but does that mean you continued to consume dairy at all, cheese?

I've had some cheese over that time and continue to do so, anything more than s small amount though and I also have an enzyme with it (lacataid).

After reading through here, it seems as though there are people who do this diet for years with no improvement. The idea of that is pretty frightening to me, at least in my current state, life is tolerable. I don't feel I can pursue my life goals too readily or at all, but I can at least subsist whereas on gluten-free and feeling miserable, subsisting was tough (i.e. dating is tough since most more desirable women would (nor can I blame them) avoid me, being really thin is tough since I lost my appetite on gluten-free since decent tasting food required more work, I'd typically eat the same bland stuff day after day).

When your doctor did these tests did he also check your vitamin and mineral levels?

Yes he did, I didn't seem to have much in the way of absorption problems

How long has it been since you started eating bread again?

Something like a year and half -- I don't eat much bread honestly anyway -- just once in a while I might have some pizza and I'm not paying attention to additives in things anymore (i.e. I have regular soy sauce instead of the wheat free soy sauce when I was gluten-free). Oddly enough, I grew to really like gluten-free pantry bread and still eat it as it's, to me, better than most conventional bread.

-->I'm mostly curious about the underlying pathology surrounding my bloating/distension since it doesn't seem to really mirror other's celiac experiences (relatively constant) . I'd even provide a picture/video if that would help.

-->Perhaps I have a particularly resistant case of bacterial overgrowth -- is constant bloating a typical symptom? i.e. I can suck in my gut but I feel a lot of pressure when I do that

0

Share this post


Link to post
Share on other sites
I've had some cheese over that time and continue to do so, anything more than s small amount though and I also have an enzyme with it (lacataid).

-->Perhaps I have a particularly resistant case of bacterial overgrowth -- is constant bloating a typical symptom? i.e. I can suck in my gut but I feel a lot of pressure when I do that

If you're intolerant to casein, Lactaid won't help. Casein is in ALL dairy products, including cheese. Incidentally, cheese has very little lactose... so there's no need for lactase (in Lactaid).

It is quite possible that the balance of flora in your intestines is off. There's plenty of advice on this forum if you want to search for "candida." Honestly... my bloating was the same way. Even after a year of pilates, I still had pain from tight waistbands. The Atkins diet helped. Duh! That was one of my first big clues that I couldn't tolerate gluten. Some people call the constant bloating the "celiac belly." I wouldn't say that's an atypical symptom. ;)

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
      104,105
    • Total Posts
      920,391
  • Topics

  • Posts

    • Here is another point.  My hubby went gluten-free per the poor advice of his GP and my allergist.  It worked.  A tough first year, but he got well.  Thirteen years later, I got diagnosed with celiac disease.  I was shocked!  😱.   Does he have celiac disease?  We will never know because we can not afford to have him do a challenge.  He refuses and I can not blame him.  He knows he will be very sick!   The point?  I am so lucky that we both can not have gluten.  I never worry about him making me sick or vice versa. We made the house completely gluten free for  1) our health and 2) the fact that our kid started helping in the kitchen. Kids make mistakes and I personally need a safe haven.  She wants gluten?  I buy prepackaged stuff and she takes it to school.  All parties and events at my house are gluten free.  Lots of work, but we stay healthy.  She does not have celiac disease.  When she is preparing for a celiac test,  I send her on the porch to eat cookies or bread or whatever floats her boat.  We travel in a gluten-free RV.  I have five sizes of ice chests.  We just have to be prepared for any event.   How can we live this way?   We love feeling good.
    • Freize is right, you need to think about your environment.   Based on that a study I posted for you, you will note that the patients who were diagnosed with refractory celiac disease and THOUGHT they were diet compliant found that they WERE NOT diet compliant.  How is this possible?   This is way out there, but unless you are growing all your own food, you don't really know if it is gluten free.  In the US, we do have laws to help protect our food supplies (no perfect, but a start).    I can not speak for India.  For example, what about your soy?  It can be contaminated by the farmer as it is often rotated with wheat.  Here is an article by Jane Anderson who has celiac disease.  She is very strict as she has DH (celiac rash), but she cites Trisha Thompson who tests foods for gluton contamination, The gluten-free WatchDog (like Consumer reports).  She found that soy which is naturally gluten free, but can be cross contaminated by wheat: https://www.verywell.com/is-soy-gluten-free-562371 so, start thinking about your food supply. As far as a negative TTG IGA or TTG IGG?  I test negative to both.  Only the DGP IGA has ever been elevated in my blood tests (even repeats), yet I had a Marsh Stage IIIIB on my biopsy.  Have you had a DGP IGG?  (I do not see this in your posting).   http://www.cureceliacdisease.org/screening/ These additonal celiac tests might help you feel confident that you have celiac disease and not something else that is damaging your villi.  But remember, some  folks have celiac disease even with negative blood.  I am not IGA deficient, so this is an area I have not researched.  Not to mention that some celiac researchers do not think that the celiac  antibodies tests are good for diet compliancy.   I wish I had better answers for you.  Try a grain free, whole foods diet of meats, fish, eggs, and vegetables for a while.  All food prepared by you. Who cooks your food now?  Is your home gluten free?  Cross contamination at home?  Kissing a loved one.  We had a doctor with celiac disease who was getting glutened by her little children who were consuming gluten!  
    • I won't say I will never eat out but I can't see me eating out for the foreseeable future. Even then, I will most likely only eat at a dedicated gluten free place. I am extremely sensitive to the tiniest amount of gluten and it's just not worth the risk to me. Eating out is playing Russian Roulette as far as I'm concerned and I'm not ready to play that game yet.
    • You are right. The weirdest part is that I feel fine, however, I am sure cross-contamination is doing damage even when we don't think it is. 
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,144
    • Most Online
      1,763

    Newest Member
    Alice Fontana
    Joined