Celiac testing, when i have the money | Arthritis Information
Well, 2 days..... 2 DAYS!!!!
I hardly have any bread because of the dairy, but my husband and i brought back bread products for a slight test.
If you don't like poo talk, please don't read below.....
Anyway, before i talked about bowel movements being white, well when i went dairy free and got rid of meloxicam it had been dark brown and happy.
This week for 2 lousy days, my husband and i ate bread. This bread didn't have dairy in it, which is very cool.
Anyway, my bowel movements are now almost completely white. My stomach is very large, bloated like, i am constipated, hives up the wazoo, nausea etc. soooooooo sick.
So, when i get the money, i will finally break down and get tested. I looked over celiac sites last night and everyone said it goes hand and hand with RA. Lucky me.
So, cutting out gluten and dairy is just going to be fun fun fun. I will eat gluten until the test of course, but not in the form of bread, too much for my body to handle.
What are the benfits of getting the test when you obviously have trouble with gluten? The tests actually aren't very accurate and if you're gluten sensitive rather than intolerant that won't even show up. I say if you feel better eating gluten free then go for it. It's a hassle at first but after you get used to it it's not so bad.
Hopefully you live in an Urban centre where there are stores that cater to a gluten free lifestyle. In Vancouver there's even a shop that makes gluten free organic pies! Plenty of gluten free bakeries and other options around here.Hummm... bread huh? I like french bread. White bread not so much.
After reading this post it made me want to mention what oatmeal does to me. Every time I eat a bowl of oatmeal, it runs right thru me and I will get crampy, like it tore my stomach up. It has been doing that since last year. I mean within an hour of eating it I am on the pot constantly.
I have to agree with gimpy-ago-go, if you know gluten causes problems, why put yourself though the agony and money it costs to be tested. The blood tests are not 100% accurate, especially if you are IgA deficient its 0%, and the endoscopy is no fun! You have to be on gluten to be tested anyway and its miserable. Unless, for some reason you need to know for sure by having a doctor say, "yes, you have celiac"---but there are no meds you can take, the only cure is to just totally eliminate gluten from your diet. You can do that yourself. I am one of those who has to eliminate oats too, but some celiacs can eat them if they are the kind that are specially grown to be pure. They give me a tummy ache.
Hi Bubbagump,
Have you had a liver blood test lately? The reason I ask this is that my son's bowel movements turned white when his liver shut down and they said that his BM's were white because his liver wasn't making any bile. His belly also became distended too. Hope you're feeling better soon.
Yes- I forget what I heard about white BM's but it wasn't good. Please tell your doctor about it.Here's a lab to consider:
https://www.enterolab.com
And here's why ...
My sis-in-law kept getting negative results for celiac on the blood and biopsy tests. Her nutritionist recommended this lab in Texas as they had a good reputation. She gathered up her sample and mailed it down to Texas (from Canada). She finally received her positive celiac diagnosis, has been on a gluten-free diet for 2 weeks and feels the best she has in years.
She kept trying because her 3 brothers (including my husband), 2 nieces and a nephew are all celiac. She had an unusual presentation of gastric reflux only, but didn't give up searching for answers.
Now she's going to test both her daughters using this lab. Its very likely at least one of them is celiac too. We're also getting their 84 year old mother tested (starting locally with blood tests first) as she has acid reflux and a major saliva problem.
- Joy
P.S. My husband is grumbling right now because he couldn't find gluten-free bread crumbs so is making burgers without them. Lesson learned, stock up when there in the store!
5 minutes to lights out!
I get my liver tested with 3 different tests monthly (on arava), they always come back better than great.
Having the celiac test is very important. If it comes out positive, then i will need to have my colon checked on various occasions cuz it destroys parts of your insides.
But, by going to the doc, even if i am one that comes out neg with the test (works like RA, you can have it but blood test is neg) then my doctor and i know i get sick by it and he will know to give me colon tests when needed to make sure i am not damaged.
I also want to be tested because my daughter has the symptoms too. She doesn't eat cereal or cereal bars cuz she gets very sick to her stomach. She also has the celiac rash that i always had growing up on her underarms and knees like I did. If i get diagnosed, we are taking away gluten for the whole family and will get her tested. Having it on paper is easier when you have a new doctor in the future and the proof on paper will help make them believe, if it isn't they might just think you are being paranoid.
All I know is I am sick sick sick. I have the pain in the right spot of my uterus area, lower back pain, nausea, headaches, my foot is asleep and won't stop buzzing, i have horrible edema in my legs with hives on the outside of the edema spots, almost white clay bowel movements etc.
My biggest worry is my daughter. Gluten heavy foods make her sick and it scares me.
One thing less to worry about is the idea that you will have to to have your colon checked on occasion. Once you are gluten-free (GF), your system will begin to repair itself, not gain additional damage. Your system will only get better, not worse.
I just asked my hubby and he said he was never instructed to go back for periodic tests. (However, if you have anything that says he should, I'd love to have the link to it.)
I'm sorry that you are so sick right now, and am sending you my best wishes for the answers and treatment plan you need.
That's strange. My father has to get a colonoscopy (not sure of spelling) yearly to check for any possible damage and he is completely gluten free.
Info from Celiac Disease Center:
Follow-Up Testing
What does follow up testing do?
Follow-up testing is conducted to ensure that antibody levels are returning to normal, indicating that the intestine is healing on the new diet. For this reason, repeat intestinal biopsies are no longer necessary. These tests also indicate the extent to which a celiac is avoiding gluten, and can detect when hidden gluten has entered the diet
How often should follow up testing occur?
New celiacs should receive follow-up testing twice in the first year after their diagnosis. The first appointment should occur three to six months after the diagnosis, and the second should occur after 1 year on the gluten-free diet. After that, a celiac should receive follow-up testing on a yearly basis.
You really don't need any written proof of Celiac for another doctor down the road -- I have never had a new dr tell me that they required documented proof that I have it. I just tell them. My biggest problem over the years has been to make sure that there is no gluten or dairy in any meds drs prescribe. For example, one dr had me using an asthma med inhailant which made me very ill and the asthma worse. After trail and error, it became very obvious that it was the cause. So, after I did research, called the company to verify, I had to instruct the dr about the fact that it had a milk powder base. Dugh! You really have to be your own avocate. As far as further endoscopy is concerned, some do a follow up and some dr's don't, usually about 1 yr later after you've been on the gluten free diet. Usually, only blood work is done, though, unless you are somehow IgA compromised, then they might opt for another endoscopy since the blood ck is invalid. It's an endoscopy (through the mouth into the small intestine) that is
used to diagnosis celiac, not colonoscopy (which is up the other way). The colonoscopy is on the same schedule as everyone else --every 10 yrs beginning about 50 yr old -- or sooner if you are high risk because of symptoms or family history of colon cancer. These are two separate things!
My dad has the colonoscopy to make sure the gluten hasn't destroyed his colon. He also gets other tests. He just complains about the colon one most.My husband and both of my sons (age 8 and 10) have Celiac. My husband was diagnosed with blood work and then an endoscopy. My children were diagnosed strictly by blood. Their levels were positive...I didn't see any reason to put them through endoscopies. We are all gluten free now and it is not difficult once you have a good grip on what foods are 'safe'.
Lcarter is right...the only way to diagnose celiac is through blood work and ENDOSCOPY...not colonoscopy. As far as follow-up care...they go once a year for blood work...that's it.
If being gluten free makes you feel better....just do it. I have never had any doctor or even my kids school ask for proof that they have celiac.
Copyright ArthritisInsight.com