Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

If Looks Could Kill


Adalaide

Recommended Posts

Adalaide Mentor

I'd be dead. My husband had an appointment today with his endocrinologist today and I always tag along so I know firsthand what I need to know. Over the last few years he has been having increasing trouble controlling his blood sugar. During this time he has also had increasing bowel issues. Last fall he was told he has IBS. His mother is constantly weak, tired and has been battling lymphoma for many years.

So, unable to keep my mouth shut as the doctor offered suggestions I asked if it was possible that celiac could contribute to his increasing troubles with his spikes and lows. The doctor filled out the paperwork for blood work while my husband glared at me. Now I wouldn't wish celiac on anyone, but I also don't want to spend a decade watching my husband die of cancer while losing his feet a toe at a time and counting the days til he ends up on dialysis. (Okay, morbid but I this sort of thing just pops in my head.)

As an extremely picky eater, he would have significantly more trouble adjusting to a gluten free diet than I did. The doctor did suggest that even if the blood tests are negative that it wouldn't hurt to go gluten free and see if symptoms improve and if they do to try a little gluten again and if he gets sick again that it's obviously celiac. He mentioned that it's far easier today than it would have been a decade ago, although I doubt my husband finds that encouraging. (I could have kissed him, I didn't imagine I'd ever talk to a doctor who knows half as much as my limited knowledge of celiac.) All that's left for me to do is convince my husband, regardless of the test results, to go through with at least trying a gluten free diet.


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



Celiac.com Sponsor (A8-M):



IrishHeart Veteran

I would have done the same in your shoes. Those symptoms are just too closely related to gluten intolerance/celiac.

Kisses to that endo!! :lol:

However, since you are already gluten-free, converting the two of them will not be more work for you, in fact it will be less. (As I recall, MIL lives with you guys?)

Ask him to give it a go (no cheating!) for one month. That's it.

Make some special treats and he'll be hooked on gluten-free foods.

Bet him his blood sugars and bowel issues start to resolve.

and I bet....You will win this bet. :)

Adalaide Mentor

I wish she lived with us, but no, it's her house. She wouldn't entertain the idea of making these changes in her life and frankly we don't have the kind of relationship where I would be even remotely comfortable talking to her about it. She's still convinced that all of my health problems are because of my bunny.

Right now I'm just hoping the test results come back positive. If they don't my husband will probably spout off about how I'm wrong (even though I'm not) and that will be the end of that. I did make Rice Krispie treats tonight which are one of his favorite snacks, hopefully I'll convert him one way or another. The logistics will be much easier but it'll be like trying to feed a picky toddler. :lol:

AVR1962 Collaborator

Good for you Adalaide, I don't know why some people wnat to close their ears but you are opening to options, options which are all good to investigate. My husband's health is not as good as it could be, has had a life-long issue with allergies and just keeps taking meds. I have repeated aske him if her thought about actually finding out what is causing hime issues and he repeatedly drgas his feet.

If the results don't come back positive and he starts with the "I told you so," at least you now know and there is no longer the guessing game.

Juliebove Rising Star

Have they looked at possible gastroparesis? I have it. It can make blood sugar very hard to control. Mine started out with bowel troubles and then progressed to throwing up.

Archived

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

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

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





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - cristiana replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    2. - CC90 replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    3. - Wheatwacked replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

    4. - Wheatwacked commented on Scott Adams's article in Origins of Celiac Disease
      19

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

    5. - trents replied to CC90's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      11

      Coeliac or not coeliac

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

    • Total Members
      134,189
    • Most Online (within 30 mins)
      10,442

    Lhughes327
    Newest Member
    Lhughes327
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • cristiana
      Hi @CC90 Ah... that is very interesting.  Although it is very annoying for you to have to go through it all again, I would say that almost sounds like an admission that they didn't look far enough last time?   I could be wrong, but I would not be at all surprised if they find something on the next attempt.  Coeliac damage can be very patchy, as I understand it, so that's why my own gastroenterologist always likes to point out that he's taken lots of samples!  In the kindest possible way (you don't want to upset the person doing the procedure!) I'd be inclined to tell them what happened last time and to ask them in person to take samples lower down, as  if your health system is anything like the one in my country, communication between GPs, consultants and hospitals isn't always very good.  You don't want the same mistake to be made again. You say that your first endoscopy was traumatic?  May I ask, looking at your spelling of coeliac, was this done at an NHS hospital in England?  The reason for the question is that one of my NHS diagnosed friends was not automatically offered a sedative and managed without one.  Inspired by her, I tried to have an endoscopy one time, in a private setting, without one, so that I could recover quicker, but I had to request sedative in the end it was so uncomfortable.    I am sorry that you will have to go through a gluten challenge again but to make things easier, ensure you eat things containing gluten that you will miss should you have to go gluten free one day. 😂 I was told to eat 2 slices of normal wholemeal bread or the equivalent every day in the weeks before , but I also opted for Weetabix and dozens of Penguin chocolate biscuits.  (I had a very tight headache across my temple for days before the procedure, which I thought was interesting as I had that frequently growing up. - must have been a coeliac symptom!)  Anyway, I do hope you soon get the answers you are looking for and do keep us posted. Cristiana  
    • CC90
      Hi Cristiana   Yes I've had the biopsy results showing normal villi and intestinal mucosa.  The repeat endoscopy (requested by the gastro doc) would be to take samples from further into the intestine than the previous endoscopy reached.      
    • Wheatwacked
      Transglutaminase IgA is the gold-standard blood test for celiac disease. Sensitivity of over 90% and specificity of 95–99%. It rarely produces false positives.  An elevated level means your immune system is reacting to gluten.  Non-Celiac Gluten Sensitivity (NCGS) does not typically cause high levels of tTG-IgA. Unfortunately the protocols for a diagnosis of Celiac Disease are aimed at proving you don't have it, leaving you twisting in the wind. Genetic testing and improvement on a trial gluten free diet, also avoiding milk protein, will likely show improvement in short order if it is Celiac; but will that satisfy the medical system for a diagnosis? If you do end up scheduling a repeat endoscopy, be sure to eat up to 10 grams of gluten for 8 - 12 weeks.  You want  to create maximum damage. Not a medical opinion, but my vote is yes.
    • trents
      Cristiana asks a very relevant question. What looks normal to the naked eye may not look normal under the microscope.
    • cristiana
      Hello @CC90 Can I just ask a question: have you actually been told that your biopsy were normal, or just that your stomach, duodenum and small intestine looked normal? The reason I ask is that when I had my endoscopy, I was told everything looked normal.  My TTG score was completely through the roof at the time, greater than 100 which was then the cut off max. for my local lab.  Yet when my biopsy results came back, I was told I was stage 3 on the Marsh scale.  I've come across the same thing with at least one other person on this forum who was told everything looked normal, but the report was not talking about the actual biopsy samples, which had to be looked at through a microscope and came back abnormal.
×
×
  • Create New...