Jump to content
  • 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

Canceling My Colonoscopy


imsohungry

Recommended Posts

imsohungry Collaborator

Hi everyone,

I'm supposed to have a colonoscopy tomorrow, but I'm canceling it. Besides my Dr. being condescending...I've since realized that a colonoscopy is not the test to get for Celiac testing, and that is how he says he tested for it last time.

I am also too weak for the prep. required for the test. A whole bottle of Miralax and 4 Ducolax tablets. I'm already having D 5-10 times a day (the other day, 12). I don't have enough strength not to eat AND take all that to "flush" out my system.

Meanwhile, while I postpone the test(s) and look for a new GI, I was wondering, on average, how long it takes to see results once one goes gluten-free?

I've been gluten-free before, and my stomach regulated itself. It wasn't until this doctor told me to eat gluten again that my tummy started acting crazy.

What actually happened was that I ate gluten during my pregnancy, and I had no bad reactions. Once my son was born, my symptoms came back. This doctor told me it obviously wasn't gluten sensitivity or intolerance or I would have been sick during my pregnancy. Nonetheless, gluten-free is the ONLY time my stomach has functioned "normally." Any thoughts? Any ideas on when I should start feeling better after going gluten-free again...I know it varies by person, but is there a "general" time-frame? Thank you. :)

-Julie


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

imsohungry Collaborator

Your doctor does sound clueless if he was looking for celiac with a colonoscopy he wasn't actually looking for celiac at all.

I find it interesting that your symptoms resolved while you were pregant and resumed the baby. I don't know if it is common but I saw the same effect when I was preggers with my second child. I had horrible morning sickness but once that was over I felt better than I had in a long time. Of course symptoms came back with a vengance after she was born.

Have you had a celiac panel done? Your regular doctor or even your OB/GYN could order it. You do need to have that done before you go gluten free of course.

As far as healing times goes it can vary. I had a resolution of my D and migraines within a short time, like about 2 weeks but the rest of the issues took much longer. Healing can take some time but if you go with a whole food unprocessed diet and do the things you need to do to be safe at home that will help speed things along.

I wish you the best and although I think you did the right thing to cancel with this clueless doctor do be sure to find a new GI who is more celiac savvy in case your issues don't resolve. You may want to consider finding a new one before you go gluten free if you feel you need a formal diagnosis with the endo. Some GP or Internists may diagnose based on blood test or symptoms resolving gluten free but not all will.

Interesting that you had the same results when you were pregnant! I had horrible morning sickness through my first trimester and lost a lot of weight, and then I started craving Krystal hamburgers (like White Castle burgers). I could eat 10 at a time! But amazingly, I wasn't doubled over with pain and diarrhea.

I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

Sigh....I just want to feel better. :unsure:

cassP Contributor

it depends on if you're the kind of person who needs an Official Dx.... if you do- i would get to a different GI ASAP, stay on the gluten & get the endoscopy.... if you dont need the dx, then go off the gluten now.... that's a hard decision- and up to every individual...

anyways- my intestinal issues improve 95% with 2-4 weeks of going gluten free!

i think it was a good decision for you to cancel your Colonoscopy- what a strange doc. I dont know your age, or health- but it IS good to the Colonoscopy to rule out other illnesses.... especially if you have Celiac- its good to check the colon to make sure there's been no damage. if you need the DX- then change docs now, stay on gluten, and get both procedures done-

OR, if u dont need the dx.... get healthy now OFF GLUTEN... and get the colonoscopy later when you're healed enough to handle the Prep

best of luck to you :)

Skylark Collaborator
I have had a blood panal done by a good GI who has since moved out of state; his results came back partially positive (which means inconclusive), but he told me to go gluten-free because of my family history of celiac and GI problems. He also said that my personal symptoms and other autoimmune diagnoses led him to believe that "in [his] professional opinion," if I didn't start the diet, he would be seeing me back in five years with full-blown celiac with intestinal damage.

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

imsohungry Collaborator

I'm confused. Why are you gluten challenging when your doctor told you that you were latent celiac? Did he explain that celiac disease is progressive and the more gluten you expose yourself to, the worse the autoimmunity can become?

Get off the stuff and get well again. Things should start to settle down in a couple weeks. If you're so weak on gluten challenge that you can't even tolerate a bowel prep, you have your answer about celiac anyway. Do yourself a favor and refuse further challenges to avoid making your gluten problems worse.

The reason I continued eating gluten after my pregnancy is because my new GI did bloodwork that came back normal (I had to change GI's once my other one moved out of state) and the new GI also told me that I didn't need to be gluten-free. :blink:

Skylark Collaborator

That's confusing all right. :blink: The blood tests can shift around, especially anti-gliadin.

I think you have your answer about gluten, though. Feel better soon!


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



Celiac.com Sponsor (A8-M):



SGWhiskers Collaborator

Were you gluten free when you had the 2nd blood test done? If yes, it is supposed to come back negative. That does not mean it is gone, just that you are managing the diet well. Also, if the doc didn't run all the tests, he/she could have missed the one that was positive.

After learning from these folks and online journal articles, I would stay gluten free for life even if I only had one positive result.

frieze Community Regular

celiac being autoimmune, it is no surprise that it wanes during pregnancy.

undiagnosed2years Newbie

I became ill after a pregnancy. Been in poor health ever since. These stomach problems I'm having didn't start right away after the pregnancy though, but a few months afterward.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - catnapt replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    2. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    3. - trents replied to catnapt's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      8

      how much gluten do I need to eat before blood tests?

    4. - SilkieFairy posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      IBS-D vs Celiac

    5. - catnapt posted a topic in Related Issues & Disorders
      0

      anyone here diagnosed with a PARAthyroid disorder? (NOT the thyroid) the calcium controlling glands

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,321
    • Most Online (within 30 mins)
      7,748

    James Minton
    Newest Member
    James Minton
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • catnapt
      oh that's interesting... it's hard to say for sure but it has *seemed* like oats might be causing me some vague issues in the past few months. It's odd that I never really connect specific symptoms to foods, it's more of an all over feeling of unwellness after  eating them.  If it happens a few times after eating the same foods- I cut back or avoid them. for this reason I avoid dairy and eggs.  So far this has worked well for me.  oh, I have some of Bob's Red Mill Mighty Tasty Hot cereal and I love it! it's hard to find but I will be looking for more.  for the next few weeks I'm going to be concentrating on whole fresh fruits and veggies and beans and nuts and seeds. I'll have to find out if grains are truly necessary in our diet. I buy brown rice pasta but only eat that maybe once a month at most. Never liked quinoa. And all the other exotic sounding grains seem to be time consuming to prepare. Something to look at later. I love beans and to me they provide the heft and calories that make me feel full for a lot longer than a big bowl of broccoli or other veggies. I can't even tolerate the plant milks right now.  I have reached out to the endo for guidance regarding calcium intake - she wants me to consume 1000mgs from food daily and I'm not able to get to more than 600mgs right now.  not supposed to use a supplement until after my next round of testing for hyperparathyroidism.   thanks again- you seem to know quite a bit about celiac.  
    • trents
      Welcome to the celiac.com community, @SilkieFairy! You could also have NCGS (Non Celiac Gluten Sensitivity) as opposed to celiac disease. They share many of the same symptoms, especially the GI ones. There is no test for NCGS. Celiac disease must first be ruled out.
    • trents
      Under the circumstances, your decision to have the testing done on day 14 sounds very reasonable. But I think by now you know for certain that you either have celiac disease or NCGS and either way you absolutely need to eliminate gluten from your diet. I don't think you have to have an official diagnosis of celiac disease to leverage gluten free service in hospitals or institutional care and I'm guessing your physician would be willing to grant you a diagnosis of gluten sensitivity (NCGS) even if your celiac testing comes up negative. Also, you need to be aware that oats (even gluten free oats) is a common cross reactor in the celiac community. Oat protein (avenin) is similar to gluten. You might want to look at some other gluten free hot  breakfast cereal alternatives.
    • SilkieFairy
      After the birth of my daughter nearly 6 years ago, my stools changed. They became thin if they happened to be solid (which was rare) but most of the time it was Bristol #6 (very loose and 6-8x a day). I was on various medications and put it down to that. A few years later I went on this strict "fruit and meat" diet where I just ate meat, fruit, and squash vegetables. I noticed my stools were suddenly formed, if a bit narrow. I knew then that the diarrhea was probably food related not medication related. I tried following the fodmap diet but honestly it was just too complicated, I just lived with pooping 8x a day and wondering how I'd ever get and keep a job once my children were in school.  This past December I got my yearly bloodwork and my triglycerides were high. I looked into Dr. William Davis (wheat belly author) and he recommended going off wheat and other grains. This is the first time in my life I was reading labels to make sure there was no wheat. Within 2 weeks, not only were my stools formed and firm but I was only pooping twice a day, beautiful formed Bristol #4.  Dr. Davis allows some legumes, so I went ahead and added red lentils and beans. Nervous that the diarrhea would come back if I had IBS-D. Not only did it not come back, it just made my stools even bigger and beautiful. Still formed just with a lot more width and bulk. I've also been eating a lot of plant food like tofu, mushrooms, bell peppers, hummus etc which I thought was the cause of my diarrhea before and still, my stools are formed. In January I ran a genetics test because I knew you had to have the genes for celiac. The report came back with  DQ 2.2 plus other markers that I guess are necessary in order for it to be possible to have celiac. Apparently DQ 2.2 is the "rarer" kind but based on my report it's genetically possible for me to have celiac.  I know the next step is to bring gluten back so I can get testing but I am just not wanting to do that. After suffering with diarrhea for years I can't bring myself to do it right now. So that is where I am!   
    • catnapt
      learned I had a high PTH level in 2022 suspected to be due to low vit D  got my vit D level up a bit but still have high PTH   I am 70 yrs old (today in fact) I am looking for someone who also has hyperparathyroidism that might be caused by malabsorption    
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.