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

Anyone Biopsied W/in 6 Mo. Off Gluten? Plus Fertility ?s

mhb

Recommended Posts

mhb Apprentice
mhb
Posted

I am reading Peter Green's 2006 book "Celiac Disease: A Hidden Epidemic." I was surprised to read he feels you can biopsy w/in first 6 months off gluten, that it takes 6 mo. to 1 yr. for the tissue to heal. Well I'm about 4 mo. to the day and had written off a chance at a biopsy 'til now. I just wonder if others hear conflicting info about this time frame, or actually got a positive dx during this window. I need to decide what to do fast. I'll be unavailable for it from Oct. 15 through at least early Nov., and then will be 5 mo. into gluten-free. I *really* don't want to biopsy and have them pull up nothing if something's there 'cause I'll wonder and wonder, did they just miss the right spot? How many sites do they grab from? Can they see that they're getting the areas most likely to be damaged first, etc.? If I could have celiac without villi atrophy yet, should I bother? Shouln't the gene test come 1st? If no genes, no biopsy.

My main concern is much resolution of bloating/distention on gluten-free (though not completely, it's clearly a lot better and I'm working on other food problems like dairy, potatoes ...), and regular periods almost 5 mo. straight for the first time at age 46 (never wanted to get pregnant). I was always treated for PCOS though I always seemed somewhat on the periphery of that symptom cluster, even told my ovaries were not enlarged or polycystic. Green's book is quite objective and he readily says when a condition doesn't have good research support for a relationship with celiac, but the fertility issue gets treated like osteoporosis, DH, malignancies, etc., i.e., as something that is likely more than just an intolerance. I can't find anywhere an indication that non-celiac gluten intolerance can mess with fertility. Anyone else?

So how many of you would go with the biopsy asap? How many wouldn't? I know I really have to decide for myself.

What does it cost if my ins. won't pay?

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.

Go to topic listing

  • 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. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      Thank you @cristiana. Its really helpful to hear your experience, thanks for sharing. 8 years is a long time! And its also good to know that others have experienced worsening before it gets better. I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my...
    2. trents
      - trents replied to junell's topic in Related Issues & Disorders
      1

      Help!

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance...
    3. junell
      - junell posted a topic in Related Issues & Disorders
      1

      Help!

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea...
    4. cristiana
      - cristiana replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time. Thankfully he is a fantastic GI, with a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously! But I needed my mind to be put at rest as my symptoms...
    5. Rejoicephd
      - Rejoicephd replied to Rejoicephd's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      12

      Struggling to get into a good pattern

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      130,647
    • Most Online (within 30 mins)
      7,748
    Priscilla mc
    Newest Member
    Priscilla mc
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thank you @cristiana.  Its really helpful to hear your experience, thanks for sharing.  8 years is a long time!  And its also good to know that others have experienced worsening before it gets better.  I've just started doing the food diary recently, and I'll keep that going. It's at least helping me try to get a handle on this, and also helps increase my overall awareness of what I'm putting in my body. I will also message my GI doc in the meantime too.  Thanks, it's really helpful to talk through this.  
    • trents
      Help!

      By trents · Posted

      Yes, the development of additional food intolerances is a common spinoff of celiac disease. To ensure valid testing after beginning a "gluten challenge" you would need to be consuming at least 10g of gluten daily (about the amount in 4-6 slices of wheat bread) for at least two weeks. Many cannot follow through with this regimen, however, as their intolerance reactions are just too strong and present too much health risk.
    • junell
      Help!

      By junell · Posted

      I've been gluten free for 5 years, as well as being intolerant to gluten, my list of intolerances is growing.. from dairy, eggs, soya, yeast, to mushroom, garlic, onion, spinach and quite a few in-between, basically my diet is gluten-free cornflakes, rice, banana, almond milk and fish anything else causes bloating, severe abdominal pain, mucousy diarrhoea, lethargy, muscle and joint pain, kidney pain, headaches, and mouth ulcers. I've been told it's IBS, I think it's more than that... I've been sent to a gastroenterologist who tested for coeliac, if course it came back negative because, as I told him, I haven't eaten gluten for 5 years, he's asked me to eat gluten for 4 weeks and redo the blood test, so I've tried small amounts of crispbread for 3 days and am in agony, I can't do this for 4 weeks and then however long it'll take to recover. Has anyone got any suggestions, and is multiple food intolerances a common side effect of coeliac? I'm struggling! And struggling to be taken seriously 😒 
    • cristiana
      Struggling to get into a good pattern

      By cristiana · Posted

      I think going back to your GI isn't a bad idea - my visits to the GI did not stop following my diagnosis as I had annoying issues on and off for some time.  Thankfully he is a fantastic GI, with  a great sense of humour, so it wasn't a chore to see him again although I'd rather not have had to, obviously!  But I needed my mind to be put at rest as my symptoms didn't seem to go away overnight as I'd hoped they would.  Initially I recall he recommended I went Dairy Free for three weeks, and he told me it would take that time to see an effect.  At that time, even lactose free milk went straight through me, so it is important, I would say, to even avoid that during a Dairy Free trial. My ongoing symptoms were bloating which did respond a bit to that trial.   However, within about 18 months there was a return to a very sore stomach, plus various aches and pains.   It turned out some gluten was sneaking in with my iron supplement (I was buying Floradix instead of Floravital), but I also think the dishwasher, the oven and eating out were contributors, too. Before my numbers normalised (from memory, about eight years!) I had several follow up appointments and a few more tests, but things gradually did get better.  Having read many accounts on this forum over the years, I don't think it is uncommon for symptoms to get a bit worse before getting better, that was certainly the case with me.  Your gut is damaged so you may well have issues digesting other food in the short term. But do try to be as scrupulously gluten free as you can possibly be as a first step, and I'd definitely try a three week Dairy Free trial.   Your villi because they are damaged are not able to create the lactase required to digest dairy at this time so you may well see some improvement if you come off dairy for a while.  Perhaps keeping a food diary of what you eat, where you eat it, whilst a bit onerous to do, will help identify foods that are causing issues.  For a while, apart from oats, I found peas, lentils and soya products hugely aggravating.  Things should calm down.
    • Rejoicephd
      Struggling to get into a good pattern

      By Rejoicephd · Posted

      Thankfully those are normal. B12 was on the low end of the normal range when I first got diagnosed. When I last got it checked, it had come up a lot (455 last time checked).
×
×
  • Create New...