Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Diagnosed 5 Days Ago..


FrooFroo

Recommended Posts

FrooFroo Newbie

I received the results for my lab work late tuesday night, confirming that I have celiac disease. I sent a stool sample and a dna sample to a lab in texas (I think), in case anyone wants to know how I was diagnosed.

The results were:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 62 Units (Normal Range <10 Units)

Fecal Anti-tissue Transglutaminase IgA 31 Units (Normal Range <10 Units)

Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units)

Fecal Anti-casein (cow


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



DakotaRN Newbie

I really feel for you. I know this is very overwhelming but you have found this site. It has a lot of wonderful information in it. Start out with basics, plain meat and vegetables & fruit. Alway read lables. Take it one day at a time. Good luck to you. Remember there is alway someone here to ask advice from or vent to.

Goodluck.

leadmeastray88 Contributor
I received the results for my lab work late tuesday night, confirming that I have celiac disease. I sent a stool sample and a dna sample to a lab in texas (I think), in case anyone wants to know how I was diagnosed.

Unfortunately, Enterolab cannot diagnose Celiac Disease, nor do they claim to be able to on their website. All they are able to do is detect active dietary gluten sensitivity in the stool. This doesn't necessarily mean that you have Celiac or that you will develop it, just that you are reacting to gluten. Which really, is almost the same thing :) The treatment is the same: the gluten free diet.

Some people think that gluten sensitivity is the pre-Celiac stage. Someone else more knowledgeable will probably chime in with the specifics, but Enterolab's testing is not widely recognized by the current medical community as of yet, unfortunately. We are hoping though! :) It has helped many of us here. I also had the Enterolab testing done, and it helped me in the way that I know I have to have a lifelong gluten free diet or else I will be very ill. If that is all you need then Bingo, you've found your problem :)

However, it's clear that you have a problem with gluten given your symptoms and how they've resolved with the diet. Have you ever had the bloodwork done? If you want to get it done you need to be eating gluten, however lots of people here are comfortable with their self-diagnosis because we're frustrated with our doctors not listening.

The best way to go about gluten-free at first is all-natural things like rice, fruits, veggies, etc. Some say that you'll heal faster if you cut out dairy as well, may be hard for you :)

Also you'll need to replace your toaster, colander and any condiments that could be contaminated (peanut butter, jam,etc) so you don't get any traces that way.

I for one still use the same cosmetics, however I know some people use use gluten-free ones like Afterglow.

In any case, you've found a great support group! :) If you feel better off gluten you should stay that way!

MySuicidalTurtle Enthusiast

Hello! There is plenty of gluten-free and dairy-free cheese. . .even some that melt! The past few years have just been great in that industry. I am a gluten-free vegan, so, I don't do dairy, either. I just had pizza this weekend, using a soy based cheese. It was great.

The Celiac gene is different than say eye colour. However, I suffered my whole life with this disease and would have been grateful to have been diagnosed as a small child. Why have your kid suffer just to look normal? Plus, I was always having to go to the bathroom, have a ride to events because I couldn't always make a bus trip with no bathroom stops, and all that anxiety in class wondering if I was going to be sick. The same for my brother, too. A diet change is easy for a kid, at least it involves no shots, no surgeries, and isn't fatal! Plus, you can make most anything gluten-fee, so, they won't be left out.

This whole diagnosis will be very, very frustrating and overwhelming. It will take weeks or months to get used to, but like the other poster said- stick to naturally gluten-free things until you get your footing.

Good luck, and remember that you will feel better!

FrooFroo Newbie

Ack, sorry for the slow reply. I'm at home for a little while before the summer semester starts and I have to pry the computer away from my brother.. >_> He has already threatened to dump a bag of flour on me. I guess that is siblings for you.

@ leadmeastray88 - I've never had the blood work done for celiac disease, but I know a few members in my family have had it and it always came back negative.. But my grandmother, for example, definitely has it.. she had a lot of the same symptoms as me except she lost weight and she has problems with her teeth. Another member of my family that passed away had the test ran and my mom says she was more sensitive than we probably even knew.. That was at least 5+ years ago though in this person's case. I think I will just self diagnosis myself, since I really don't want an intestinal biopsy! I am having bloodwork done for other allergies.. I think I may be allergic to some preservatives, like MSG and sulfites.. so I will ask if the test could also include one for wheat, rye, and barley. My doctor is also my dad, but I also had the same problems.. For years I would complain about being sick to the stomach or having a headache or whatever.. and my dad would tell me that I needed to lose weight or I ate too much or I needed to drink more fluids or eat more fiber.. I guess in some ways it was worse having my dad as a doctor, because he would tell me a lot of stuff that I think another doctor wouldn't of said. :P My mom was the one that looked up information on celiac disease and showed it to him and ordered the test. Now she is pushing for him to start running the test in his practice.

About the dairy.. Yeah, it definitely makes me sick.. I've been trying to pay attention to the way my body reacts to different things. With dairy I can eat a little and have no reaction, but say.. I get a salad with ranch and cheese on it. I will wind up with indigestion maybe an hour later, but it is NOTHING like with gluten though.. I can ignore the dairy reactions, but with gluten I will end up in the bathroom one way or the other.

Has anyone tried taking those dairy enzyme supplements that they sell in walmart? I bought some the other day and wondered if it would work... Hmmm. Is the dairy allergy separate from celiac disease, like, it won't damage the intestines like gluten would?

Oh and has anyone else had problems with constipation after going gluten free? I've been having this problem for over a month now and it is super annoying! I asked my grandmother and she has the same problem too, which makes me think it will never go away. :( So far this has been the only complication with going gluten free..

ravenwoodglass Mentor
Has anyone tried taking those dairy enzyme supplements that they sell in walmart? I bought some the other day and wondered if it would work... Hmmm. Is the dairy allergy separate from celiac disease, like, it won't damage the intestines like gluten would?

Oh and has anyone else had problems with constipation after going gluten free? I've been having this problem for over a month now and it is super annoying! I asked my grandmother and she has the same problem too, which makes me think it will never go away. :( So far this has been the only complication with going gluten free..

The dairy enzyme will be helpful if you are reacting to the sugar in milk, lactose, but wouldn't help with an intolerance to casien, the milk protein. The same area that is damaged by celiac is the one that produces the enzyme to digest the milk sugar and some folks after they heal are able to handle dairy with no issues. It would be a good idea to limit or cut out dairy until you are fully healed and then add it back in starting with hard cheeses and yogurt. If you tolerate those okay then you could try soft cheeses like mozzarella and plain milk which are much higher in lactose.

I also had issues with C after I was diagnsosed. For me it was a soy intolerance that caused it. Soy will bind me up for days and I ate a great deal of it for a while as I wasn't much of a meat eater then and it is in a lot of our specialty gluten free baked goods.

FrooFroo Newbie
The dairy enzyme will be helpful if you are reacting to the sugar in milk, lactose, but wouldn't help with an intolerance to casien, the milk protein. The same area that is damaged by celiac is the one that produces the enzyme to digest the milk sugar and some folks after they heal are able to handle dairy with no issues. It would be a good idea to limit or cut out dairy until you are fully healed and then add it back in starting with hard cheeses and yogurt. If you tolerate those okay then you could try soft cheeses like mozzarella and plain milk which are much higher in lactose.

I also had issues with C after I was diagnsosed. For me it was a soy intolerance that caused it. Soy will bind me up for days and I ate a great deal of it for a while as I wasn't much of a meat eater then and it is in a lot of our specialty gluten free baked goods.

Ah, well that's good to know. I tested positive for the casein allergy, so I guess the pills wouldn't help much.. At least I know it will get better. I'm guessing no one person heals at the same rate so there would be no point in knowing how long it will take to be fully recovered.. :unsure:

I have no idea what is causing my problems with C.. It's so bizarre because before I was going all the time because of the gluten and now I go days without anything at all. The first few weeks it was very painful.. I will refrain from saying more on this subject though. :P

On a funny note, I went out to eat for the 2nd time since being diagnosed and had a really good response from the waiter.. Meal was good and I didn't get sick even though I was suspicious about the herbs and some sort of sauce that was all over my grilled tilapia.. My boyfriend, however, had 2 HUGE rolls and pasta... and to his dismay he got food poisoning and ended up having to do the mad dash to the bathroom the next morning. I know I shouldn't of made fun of him but I couldn't resist saying that that was what he got for eating all that evil bread. :lol:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,342
    • Most Online (within 30 mins)
      7,748

    Setb1210
    Newest Member
    Setb1210
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      My reaction to a gluten bolus exposure is similar to yours, with 2-3 hours of severe abdominal cramps and intractable emesis followed by several hours of diarrhea. I don't necessarily equate that one large exposure to gluten with significant intestinal lining damage, however. I think it's just a violent reaction to a what the body perceives to be a somewhat toxic substance that I am no longer tolerant of because I have quit exposing myself to it regularly. It's just the body purging itself of it rather than an expression of significant damage. Before diagnosis, when I was consuming gluten daily, I had little to no GI distress. I was, for the most part, a "silent celiac". The damage to my small bowel lining didn't happen all at once but was slow and insidious, accumulating over a period of years. The last time I got a big shot of gluten was about three years ago when I got my wife's wheat biscuits mixed up with my gluten-free ones. There was this acute reaction after about two hours of ingestion as I described above. I felt washed out for a few days and fully recovered within a week or so.  Now, I'm a 74-year-old male. So, I'm not worried about being pregnant. And I don't want to contradict your physicians advice. But I just don't think you have done significant damage to your small bowel lining by one episode of significant gluten ingestion. I just don't think it works that way.
    • Skydawg
      Wondering about some thoughts on how long to wait to try to get pregnant after a gluten exposure?  I have been diagnosed for 10 years and have followed the diet strictly. I have been cross contaminated before, but have never had a full on gluten exposure. I went to a restaurant recently, and the waiter messed up and gave me regular bread and told me it was gluten free. 2 hours later I was throwing up for the whole evening. I have never had that kind of reaction before as I have never had such a big exposure. My husband and I were planning to start trying to get pregnant this month. My dr did blood work to check for electrolytes and white blood cells, but did not do a full nutritional panel. Most of my GI symptoms have resolved in the past 2 weeks, but I am definitely still dealing with brain fog, fatigue and headaches. My dr has recommended I wait 3 months before I start to try to get pregnant.   I have read else where about how long it can take for the intestine to fully heal, and the impacts gluten exposure can have on pregnancy. I guess I am really wondering if anyone has had a similar experience? How long does it take to heal after 1 exposure like that, after following the diet so well for 10 years? Is 3 months an okay amount of time to wait? Is there anything I can do in the meantime to reduce my symptoms? 
    • ShadowLoom
      I’ve used tinctures and made my own edibles with gluten-free ingredients to stay safe. Dispensary staff don’t always know about gluten, so I double-check labels or just make my own.
    • Scott Adams
      It's great to hear that there are some good doctors out there, and this is an example of why having a formal diagnosis can definitely be helpful.
    • RMJ
      Update: I have a wonderful new gastroenterologist. She wants to be sure there’s nothing more serious, like refractory celiac, going on. She ordered various tests including some micronutrient tests that no one has ever ordered before.  I’m deficient in folate and zinc and starting supplements for both. I’m so glad I decided to go to a new GI!
×
×
  • Create New...