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

Discomfort And Pain And Ugh.
0

4 posts in this topic

I've never been diagnosed with a gluten allergy, at least, not positively. I went to the doctors a few years ago and got tested for a gluten allergy, and it was negative. But, the symptoms were definitely there (bloating, discomfort, gas, diarrhea, constipation, breathing trouble, and heart racing) every time I ate some sort of bread, or something with wheat in it. I felt immediately better when I came off it a few years ago. In the last year, it has crept into my diet... Not daily, but every few weeks, I'd have a sauce that was wheat thickened etc.

 

I've been gluten free officially for four weeks. Actually, I've been grain-free, minus the gluten free bean flour I used three weeks ago to thicken a sauce. Other than that, I've eliminated all gluten and grain from my life, including cupboards, fridge, house etc. The closest I get to bread is walking past it in the supermarket!

 

But, week four, and I'm still feeling terrible. I'm passing a lot of mucus in my stool (visible, and floating around in the toilet bowl), and my stool sort of has a furry/flaky consistency (I'm sorry, guys - it's probably gotta be pretty ordinary reading about other people's poop!). Sometimes I suddenly have a huge desperation to go - like, I can bearly hang on. Then, when I'm actually on the toilet, it all passes out with little pushing (it's not liquid, just flaky and furry). The other night, it felt like my skin was restricting me (I have no other way to describe it). I've also begun to feel pulsating in my lower abdomen, around the same area.

 

Now, I know I should go to my doctor. I really should. But after that appointment mentioned above, it's just discouraged me and left me feeling pretty helpless. If not gluten or grain, then what? My doctor didn't give me anything inclusive to work with, or test for other allergies. She just smiled, told me to up the leafy greens and yoghurt, and sent me on my merry way.

 

I went to my naturopath two months ago, and she gave me some powder to heal my intestinal tract. I take that daily. I have explained my symptoms in the past with her, and she said it was most likely celiacs. She explained the hair like things in my intestine that flatten when gluten is consumed, so that powder was to restore them. I've used it in the past with no difficulties. (She was actually the one who suggested going grain and gluten free completely for 2014).

 

I'm wondering if anyone has any direction, or similar experiences? I know it takes a full year to properly recover from gluten damage and a few months to get gluten out of my system completely. I'm actually wondering if it could be IBS (Irritable Bowel Syndrome) or a lactose intolerance (I don't eat huge amounts of dairy, but will have milk something for breakfast, and maybe a bit of cheese on my salad; I don't "notice" an affect afterwards). My friend even thought it could be Crohn's Disease, but surely I'd notice more symptoms, other than in my bowels. I haven't lost any rapid weight (in fact, I'm probably about 20lbs overweight).

I just so dread the doctors when dealing with allergies - sometimes I feel like a number rather than a patient.

Edited by Snag
0

Share this post


Link to post
Share on other sites


Ads by Google:

I wonder if you shouldn't continue to eat gluten and see an MD to get tested for Celiac.  Celiac isn't an allergy.   Maybe an actual medical diagnosis would help you stay gluten free?

0

Share this post


Link to post
Share on other sites

As Karen said, celiac disease is not an allergy (immunoglobulin E based) but an autoimmune disease (Immunoglobulin A and G) triggered by an intolerance to gluten. You definitely sound like you have an intolerance to gluten, whether it is celiac disease (where the intestines are damaged) or non-celiac gluten intolerance (NCGI) can't be told until you do testing while eating a gluten filled diet.

 

The tests that indicate that damage is being attempted against your intestines (and celiac disease) are:

tTG IgG and tTG iGA 

DGP IgG and DGP IgA

EMA IgA

total serum IgA

 

Negative tests but a positive response to the gluten-free diet will indicate NCGI, which feels just as terrible. All tests will eventually become negative on a gluten-free diet. A 2 month gluten challenge of two slices of bread per day is usually advised before testing is done; if you decide to get tested you may not require the full gluten challenge length since you have only been gluten-free a month. Infact, you should probably get tested immediately because there is a chance that antibody levels are still lingering high enough for a diagnosis (if you have celiac disease that is).

 

IBS is more of a description of symptoms rather than a dignosis. Most celiacs have irritable bowels but the cause is celiac disease. For others IBS can be caused by other factors. Does that make sense?

 

Lactose intolerance is found in 50% of celiacs at the time of diagnosis. Lactase, which is the enzyme that digests milk sugar (lactose) is made on the intestinal villi. When celiacs have damaged villi, they can't make lactase until they are healed - in most that will take 6 months or so although a minority can never comfortably consume dairy again without taking a lactase pill first.  

 

I would encourage you to give up dairy for 6 months and then try it again.

 

You could still be recovering, my BM's were still changing one year in, or it could be other food intolerances, or even gluten still slipping into your diet. A food journal that records symptoms as well will help you to pin point any cc or problem foods... But you just may need to give it more time.

 

Best wishes with whatever you decide to do.

0

Share this post


Link to post
Share on other sites

I've never been diagnosed with a gluten allergy, at least, not positively. I went to the doctors a few years ago and got tested for a gluten allergy, and it was negative. But, the symptoms were definitely there (bloating, discomfort, gas, diarrhea, constipation, breathing trouble, and heart racing) every time I ate some sort of bread, or something with wheat in it. I felt immediately better when I came off it a few years ago. In the last year, it has crept into my diet... Not daily, but every few weeks, I'd have a sauce that was wheat thickened etc.

 

I've been gluten free officially for four weeks. Actually, I've been grain-free, minus the gluten free bean flour I used three weeks ago to thicken a sauce. Other than that, I've eliminated all gluten and grain from my life, including cupboards, fridge, house etc. The closest I get to bread is walking past it in the supermarket!

 

But, week four, and I'm still feeling terrible. I'm passing a lot of mucus in my stool (visible, and floating around in the toilet bowl), and my stool sort of has a furry/flaky consistency (I'm sorry, guys - it's probably gotta be pretty ordinary reading about other people's poop!). Sometimes I suddenly have a huge desperation to go - like, I can bearly hang on. Then, when I'm actually on the toilet, it all passes out with little pushing (it's not liquid, just flaky and furry). The other night, it felt like my skin was restricting me (I have no other way to describe it). I've also begun to feel pulsating in my lower abdomen, around the same area.

 

Now, I know I should go to my doctor. I really should. But after that appointment mentioned above, it's just discouraged me and left me feeling pretty helpless. If not gluten or grain, then what? My doctor didn't give me anything inclusive to work with, or test for other allergies. She just smiled, told me to up the leafy greens and yoghurt, and sent me on my merry way.

 

I went to my naturopath two months ago, and she gave me some powder to heal my intestinal tract. I take that daily. I have explained my symptoms in the past with her, and she said it was most likely celiacs. She explained the hair like things in my intestine that flatten when gluten is consumed, so that powder was to restore them. I've used it in the past with no difficulties. (She was actually the one who suggested going grain and gluten free completely for 2014).

 

I'm wondering if anyone has any direction, or similar experiences? I know it takes a full year to properly recover from gluten damage and a few months to get gluten out of my system completely. I'm actually wondering if it could be IBS (Irritable Bowel Syndrome) or a lactose intolerance (I don't eat huge amounts of dairy, but will have milk something for breakfast, and maybe a bit of cheese on my salad; I don't "notice" an affect afterwards). My friend even thought it could be Crohn's Disease, but surely I'd notice more symptoms, other than in my bowels. I haven't lost any rapid weight (in fact, I'm probably about 20lbs overweight).

I just so dread the doctors when dealing with allergies - sometimes I feel like a number rather than a patient.

I was admitted into the hospital when the doctors did not know what is was due to the rapid heart rate.  After four trips to the ER feeling like I was having a heart attack, they finally took it serious.  My symptoms started with heart racing, palpitations, sweating, etc.  Problem was, 24 hours after I would feel fine.  I was discharged with stomach flu and since I have an underlying heart condition anyway, the doctors said it was my heart fighting off the flu.  Anyhow, long story short, I finally went to a stomach doc to see about the extreme indegestion and vomiting I was having.  He did a scope looking for an Ulcer and found that my lower intestine and Villi were damaged.  He had a blood test to confirm.  Have you done a scope?  That is, from what I was told, the only way to truly find out. I was told years ago I had IBS, but finally 2 months ago when I started having the heart issues and so on, it was my body shutting down from the malabsorbtion and anemia.  I lost probably 12-15 pounds in a few weeks time.

 

Celiacs is not an allergy, have you asked your doctor for the Celiacs Panel?  That is what my doctor did to confirm by biopsy. 

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
      104,132
    • Total Posts
      919,525
  • Topics

  • Posts

    • To answer some of your questions.... Non celiac gluten sensitivity does not cause any damage to the small intestine so that is not the source of the "little holes or bumps".  You need to get her records including the report of the endoscopy to see exactly what it says as well as the pathology report of the biopsies. You should always get medical records anyway & keep a copy for yourself. How many biopsies did he take? There should be a minimum of 4, ideally 6. The small intestine is very vast even in a small child. An adults is the size of a tennis court! That's a whole lot of territory so biopsies can miss damage especially when enough of them are not taken! She has 2 positives on the serum panel. This crap about "weak" positives should be thrown out of the nomenclature! A positive is a positive, weak or not! Her DgP IGG is way over the range and extremely telling. As far as my knowledge goes, there is nothing else that causes a positive DgP IGG other than celiac disease. False positives are really rare and to have 2 false positives would be astronomically rare! You are right & smart that she really does need an official diagnosis! IMHO, keep her on gluten for right now. Get a second opinion pronto & I believe you'll be able to get her a dx based on the 4 out of 5 rule if nothing else. I wouldn't think it's going to take more than a month to get to see another doc for a second opinion. Then you can take her off gluten. Kids heal up really fast, way faster than us old geezers! I'm sure as others  wake up & get on their computers they will be along to voice their knowledge. I am in the eastern time zone & rise before the birds so I was on here early. Hang in there mom! You're doing the right thing!
    • Now that my initial rage has calmed a tad.... your daughter has to fulfill 4 out of 5 of the diagnostic criteria. Second opinion can do a gene test. If positive, then she will have4 out of 5 of the dx criteria to dx without a positive biopsy. See: http://www.gastro.org/news_items/a-biopsy-should-not-be-required-to-make-the-diagnosis which says in part: The presence of signs and symptoms compatible with celiac disease. Positive serology screening (high serum levels of anti-TTG and/or EMA). Presence of the predisposing genes HLA-DQ2 and/or –DQ8. Histological evidence of auto-insult of jejunal mucosa typical of celiac disease. Resolution of the symptoms and normalization of serology test following the implementation of a gluten-free diet.   Also see: http://www.tenderfoodie.com/blog/2014/5/1/dr-fasano-on-new-gut-autoimmune-research-autism-clearing-up.html She can get a dx after her symptoms resolve on a gluten-free diet!
    • OMG!!!! The doc wants her to get sicker & sicker & do further damage so he can diagnose her? Don't do me any favors doc!!! I'm so spitting med right now I can't even speak! Find a new doc, take the records & get a second opinion. Maybe the next doc will have a freaking brain & dx your daughter. She should be dx'd! This is absurd in the extreme. The very least that should happen is the doc give her a dx now & then in a year or 2 have her do a gluten challenge & do a biopsy all over again but seriously, that would be just as cruel as what he's doing now. He's an ASS!
    • Celiac disease may lead to a host of other inflammatory, gluten-related ... Fortunately, Diet Doc offers gluten-free diet plans which are customized to ... View the full article
    • Cyclinglady is absolutely correct, after hours of internet research the only gluten-free food available at JNB is a fast food chain called 'Nandos'. I was hoping for a bit more variety, but I'll take what I get.   
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,167
    • Most Online
      1,763

    Newest Member
    georgemathews
    Joined