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

What's Wrong With Me?
0

5 posts in this topic

Hi Everyone,

I'd first like to say how nice it is to have such a large kind community of contributors in such a context.

I'm curious if I'm missing something in my treatment and interpretation of my problems because, at this point, it seems as though there's nothing I can do to get any real relief...

A number of years ago, I started to have constipation and both bloating and visible distension.

-constipation for me defined as having a very hard stool every other day or so

-bloating/visible distension being defined as having a large bulbous stomach when standing, minimal amount of "pinchable" fat, a general sense of discomfort; having to wear pretty loose pants such as to not be in extreme discomfort (e.g. I'm 6'2'' and 175lb wearing a 36 inch waist pants while having a body fat of around 13-15%) -- i find the bloating/distension bothers me least if i eat/drink absolutely nothing (as such, I've only had a minimal appetite for years and have to remind myself to eat otherwise I have other problems from being too thin)

I was diagnosed with Celiac via blood tests and biopsy.

Immediately afterward, I adopted a gluten-free diet (pretty carefully, I doubt I had much exposure to gluten). I followed this diet for a year (during which point my blood work decreased from 180 to 80 (where over 30 is positive)). At the end of that year, my constipation was somewhat improved but my bloating/distension did not improve at all.

Also, during that year, I spent a period of time (3 weeks) having a virtually complete elimination diet (elemental diet) though it did not help my bloating/distension (no soy, sugars, etc.).

After the year, I decided it wasn't worth it to continue the diet since it didn't help my primary symptom of bloating (I've since started taking miralax which has solved the constipation problem). My celiac bloodwork is now back up high but I feel no different than I did during the year that I deprived myself of gluten. I also have very little lactose in my diet (that makes me feel worse) though I do have a little low lactose cheese (ie hard cheeses).

My questions are...

Is there anyone here who's been able to solve their bloating problem?

-How long did it take?

-Did it seem to relate to your bloodwork?

-Does anyone here understand the underlying mechanism for bloating in celiac? (I don't seem to pass much gas)

-If it's inflammatory -- would/has prednisone helped anyone?

-I've been trying low-dose naltrexone but it hasn't done anything for me

Could this just be IBS?

Do I just have to learn to live with being uncomfortable for the rest of my life?

Thanks guys (and gals)

0

Share this post


Link to post
Share on other sites


Ads by Google:

You need to get back on the diet. By going off it you risk comprimising pretty much any system in your body. That includes even the brain.

Have you ever eliminated all dairy? You may have an issue with casien instead of lactose.

You may want to consider seeing an allergist who can guide you in an elimination diet where you start out with 5 foods that the doctor picks to make sure you get adaquate nutrition and calories and then add back in one food in pure form at a time for week and see if you react. That might pinpoint if you have other intolerances.

Also are you on any meds or supplements and have you checked them to make sure they are gluten free? Did you get a lot of crosscontamination during the time you were gluten free? You may have been getting enough gluten to keep the bloat going from CC in 'processed in the same facilty' and eating out in restaurants that aren't as gluten savvy as we would like.

0

Share this post


Link to post
Share on other sites

Some people don't have any symptoms. That doesn't mean you shouldn't be gluten free. It canall be internal that you cannot see. You are damaging your insides by not continuing to be gluten free.

0

Share this post


Link to post
Share on other sites
Some people don't have any symptoms. That doesn't mean you shouldn't be gluten free. It canall be internal that you cannot see. You are damaging your insides by not continuing to be gluten free.

I agree with you though from reading studies on the risks of developing other problems, the relative increase is pretty tiny (e.g. the risk of intestinal lymphoma might be 3 times higher in untreated celiac disease, but the actual risk is miniscule to begin with... (the stats supporting such a relative risk are pretty risque as well))

I'm only concerned with what's certain and real as opposed to what's abstract and extremely unlikely. Keep in mind that the incidence of these other issues might appear higher here because generally only people with more serious celiac disease frequent forums like this (i.e. a biased population).

0

Share this post


Link to post
Share on other sites

Its likely that you need to decrease other potential allergens as well as the gluten. Likewise the bloating didn't go away for me (although other symptoms did) by eliminating gluten alone. I have needed to go off all grains plus most fruit to stop having a distended belly. I eat very close to the specific carbohydrate diet. You might need to too -- at least for a while. I eat squash and roots for carbohydrates, while avoiding potatoes, sweet potatoes and yams. I also have to stay off all dairy except no fat organic yogurt plus avoid all nuts. I eat sunflower seeds instead.

Gluten for a celiac is like eating poison. It causes the body to attack itself and makes for a high probability of leaky gut situation which then lead to poor absorption of basic minerals and vitamins that your body needs in order to avoid various degenerative diseases as well as auto immune responses like fibromyalgia, arthritis etc. If you know you have celiac disease from tests, you know you have it pretty bad whether you are conscious of the effects or not. Its kind of like playing Russian Roulette with your health.

I understand there is an article about celiac in Scientific America that you might want to look at. Maybe in the future we all can get away with eating gluten without ill effect; but it is at least 20 years before there is a "cure--if the scientists get lucky. At least now the blood tests for it are getting better.

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
      104,091
    • Total Posts
      920,311
  • Topics

  • Posts

    • Thanks for posting this Adrien, it's a great list and I and others will appreciate the effort and the thought behind it. I loved my time in Malaysia and I'm glad I sampled all the food I could whilst I was still on an unrestricted diet. The good thing is that, like you say, some of the nice Malay foods are still ok. As a backpacker I survived on a lot of nasi goreng and laksa, nice to think if I return there I could still do the same Terima kasih!
    • I have posted on here before. DQ2, brother with celiac, DGP iGA was the only mildly elevated test. Was gluten-free so did 6 week challenge last winter. Negative biopsy. I am gluten-free now but do go out to eat. Prior to the challenge my health was good. Since then I have: Chest pain, pain between shoulder blades, periods of shortness of breath, heart palpitations, one instance of a heart arrythmia episode, neck is tender to touch on one side (they kept saying sinuses or TMJ which my dentist vetoed) ear ache, bowels never sink. Numbness and tingling. Blood pressure variations. Could be doing chores and feel dizzy and it might be 84/52.  not super low, but not typical for me if I'm running around the house.While other days I am mildly hypertensive. Recently lost 5 lbs in 8 days without trying. Recently electrolytes were low, alkaline phosphatese was low. Ferritin started dropping so started liquid iron 2-3 times per day 4 months ago. Primary watching that, I am not anemic but we are nowhere near iron overload either.  GI doc was a dick. Did not even know DGP replaced older tests and he was very condescending When I begged him for help recently and told me to get a second opinion which is exactly what I plan on doing.  I now have pain in my upper GI area. It is tender to touch. I had my gallbladder out in 97 along with a stone and infection in my bile duct. It hurts in this area. Pancreatic enzymes look fine, liver enzymes fine. Pancreatic ultrasound fine. I will now be doing a EUS Soon to look at bile duct, pancreas and liver.   so a typical day for me is that I might feel fine for a while and then suddenly feel like I'm going to pass out. really dizzy, numbness in odd places, like my body has been hijacked. I will typically eat a bunch of food something high protein and in about an hour or so I start to feel better. However, then my upper stomach starts to hurt in place of the passing out feeling. blood sugars are also normal. After getting the " it must be panic attacks" and condescending looks a million times my primary finally ordered an ultrasound of my sore neck and there is an abnormality in my thyroid which she says looks like possibly Hashti's. Except for one time, all my serum TSH tests were normal. We have more blood work on Monday. As I have not put on any weight and there are other symptoms that are closer to Graves.  Has anyone else had any thyroid issues that followed doing a gluten challenge?  where is your stomach pain? Do you have it above or below your belly button? Mine feels like it's in the pancreas area, like 2-3 inches above the belly button and when I push on it it's tender, but not all the time. sometimes i feel it in my back. 
    • Thanks for sharing with me.  I really appreciate it.  Honestly, after a glutening last summer (still do not know what glutened me), I did not eat out for a year!  The risk was too great as my healing time took 3 months (for symptoms to subside) and six months to regain lost weight.  Our recent vacation to Europe was worth the risk  as we traveled with our entire extended family, but we were extra cautious and ate only at celiac-approved places.  Otherwise, we "dined" at markets or ate the food we brought from home.  Thankfully, we did not get glutened (at least we don't think so!)  
    • I do not struggle with this and I was brought up the same way as you. I don't struggle because for many years off & on we didn't have a bathtub, only showers as well as this being therapy or medicinal for the skin - heck even for the muscles as I age. I figure I've earned my right to luxuriate or medicate with baths any time I've a mind to. My husband saw just how bad my dh got & NEVER begrudges me a nice long soak in the big soaking tub we now have.
    • Hi, No, I do not have celiac  disease. I have an ankylosing spondylitis which is an auto-immune disease provoking an inflammation of the joints. Under the advice and supervision of my doctor and the professor at the hospital I follow a gluten free & casein free diet, which is extremely successful in preventing inflammatory events. And I've been doing so, strictly, for more than 6 years. So I'm not Celiac, but I can tell you that I react strongly every time I take gluten even in small amounts. Even soya sauce, which according to this website has an almost zero dose of gluten, is a lot too much for me. Nevertheless I allow myself to eat food which has been processed in a factory which processes gluten. To conclude, I would say that when you are travelling, especially in a country where celiac disease is scarcely known, you should be twice as careful as when you're going out at home. In the end you can never guarantee that the cook has cleaned his pan after using soya sauce and so on... You can only bet
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,121
    • Most Online
      1,763

    Newest Member
    Sambud
    Joined