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Hello From a Newly Diagnosed

TwelfthLady

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TwelfthLady Newbie
TwelfthLady
Posted

Hello everyone,

I didn't see an introduction section so I figured post diagnosis would be a good place to introduce myself.

My name is Lori to start off with :) I'm 33 years old and from Washington State.

After what's been a nearly year long diagnosis, an a-hole doctor who actually said "Well if your stomach just hurts every so often, why are you here?", a positive and very high celiac antibody blood test, nine month waiting list for endoscopy, and having to proactively chase down my biopsy results I finally got the confirmation yesterday that I have celiac disease.   I must admit it's a relief to finally have a definitive yes or no answer...not to mention a self righteous bit of me would love to shove the results in the original doctor's jerk-ish face lol.

I'm so glad there are some celiac forums out there like this, I didn't find much on google so I'm glad to have found this one!

 

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cyclinglady Grand Master
cyclinglady
Posted

Welcome!  

It is a relief to know, isn't it?  Now, you can focus on getting better.  I am going to warn you that it takes time.  Everyone heals at different rates because their damage (not just to their small intestine) is unique to them.  That means months to a year or so.  

Why so long?  There's a steep learning curve to the diet.  It's not just reading labels, but making sure you don't get cross contaminated in a restaurant, your friend's kitchen or your own.  Everything that can be swallowed must be checked (e.g. medications, supplements).   Take a look at the Newbie 101 thread located under the "Coping" section for valuable tips.  

My hubby had been gluten free for 12 years before my diagnosis.  I knew the drill.  What I did not do (and forgot about his struggle the first year) was sticking to a whole foods diet for a while to expedite healing.  Nah, I just dove into those luscious homemade gluten-free apple spice cupcakes my hubby loved (I am an excellent baker -- not to brag!).  Turns out I reacted to Xanthan Gum (who knew?) and discovered a few food intolerances (milk is a biggie).  

Consume well-cooked foods that are easy to digest until you see improvement.  

Consider asking your doctor (I know he was lame) about checking you for mineral and vitamin deficiencies.  Enzymes often help in the beginning.  Remember, you have damaged villi.  

Take care.  Take time to be mad!  :angry:Grieve!:(  But you know, things will get better!  :D

TwelfthLady Newbie
TwelfthLady
Posted
  • Author

Thanks Cyclinglady :) 

I'll definitely take a look at the Newbie thread! 

I had been eating gluten free after the blood test (having gone back on gluten two months before my endoscopy)  so it should hopefully be an easy transition back though I must admit having had the official diagnosis now I will be A LOT more diligent about it. 

Thank you for the whole foods idea too, it's a great one! 

I'll have to speak to the doctor about what you recommended...I'm actually in the middle of moving back the States having lived in the UK for two years so hopefully I get a more understanding and pleasant doctor in the future. 

Oh no you poor dear Xantham Gum and gluten free sounds like a cruel combination as it seems to be a common gluten-free ingredient. 

Thanks again for your reply and suggestions :) 

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      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you - that makes perfect sense and I understand. celiac disease is an autoimmune disease which will cause further damage while gluten sensitivity is different. Based on my symptoms and bloodwork, I am almost certain I have celiac disease.  I kind of hate to hope for a positive biopsy but a negative one would be frustrating for sure. Regardless, I have done a lot of research on gluten-free diet and am prepared to begin a new lifestyle journey - with a lot of questions along the way.  I appreciate your information and advice! 
    • trents
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      By trents · Posted

      Let's talk about terminology for the sake eliminating (as much as possible) confusion. Unfortunately, the terms "gluten sensitive" and "gluten intolerant" have, historically, been used indiscriminately. There are two primary categories of gluten disorders whose "official" terms are 1. celiac disease and 2. Non Celiac Gluten Sensitivity or NCGS for short.  I believe there is an evolution toward using the term "gluten intolerance" to refer to celiac disease and "gluten sensitive" to refer to NCGS. I say that because the words "gluten sensitivity" are actually found in the official medical term for the non celiac medical disorder involving gluten. Does that make sense? The difference between celiac disease and NCGS is that celiac disease causes inflammation in the small bowel lining and (over time) does damage to it so that it becomes inefficient in absorbing nutrients from what we eat. This is the area of the intestinal track where all of our nutrients are absorbed. Of course, this can lead to any number of other medical problems. NCGS, on the other hand, does not cause inflammation or damage to the lining of the small bowel and therefore does not produce the antibodies that celiac disease antibody tests look for. Neither will NCGS, therefore, produce a positive biopsy result. NCGS and celiac disease, however share many of the same symptoms in the area of GI distress and NCGS is 10x more common than celiac disease. There is, at the present time, no defining test for NCGS so an NCGS diagnosis is arrived at by first eliminating celiac disease for which we do have tests for. Having said that, some experts believe that NCGS can be a precursor to celiac disease.  Yes, you are correct in stating that both conditions require a gluten free diet.  So, in the absence of official testing for celiac disease (and official testing done under the proper conditions) a person who is experiencing distress when consuming gluten cannot be certain whether they are dealing with celiac disease or NCGS. Not have an official diagnosis of celiac disease while actually having the condition makes it difficult for some folks to stay on the gluten free bandwagon. It's just the psychology of the situation and wanting to rationalize away a very inconvenient and socially isolating medical condition.
    • Lynnard
      Waiting on biopsy results but wanted opinion on bloodwork

      By Lynnard · Posted

      Thank you!  This is super helpful and confirms everything I have read. I was definitely eating lots of gluten before both testing and endoscopy. If the biopsies do come back negative, I'm wondering how conclusion/distinction is made between celiac and gluten intolerance is made.  Or does it matter because presumably recommendation of gluten-free diet will be the protocol??  
    • trents
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      You are welcome! We frequently get similar comments. Knowledge about celiac disease in the medical community at large is, unfortunately, still significantly lacking. Sometimes docs give what are obviously bum steers or just fail to give any steering at all and leave their patients just hanging out there on a limb. GI docs seem to have better knowledge but typically fail to be helpful when it comes to things like assisting their patients in grasping how to get started on gluten free eating. The other thing that, to me at least, seems to be coming to the forefront are the "tweener" cases where someone seems to be on the cusp of developing celiac disease but kind of crossing back and forth over that line. Their testing is inconsistent and inconclusive and their symptoms may come and go. We like to think in definite categorical terms but real life isn't always that way.
    • Rogol72
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      By Rogol72 · Posted

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