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Moving forward

sdlane

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sdlane Rookie
sdlane
Posted

I had an endoscopy last month which show be to be a Marsh 3a category.  I'm gorging on gluten until the end of the month to make sure I'm fully glutenated (is that really a word??  lol) so the antibodies are heavily present and I don't get a false positive.  In terms of moving forward, I will obviously cut out the gluten once I'm done with my challenge.  I've already cut it out of my shampoo, conditioner, makeup, body wash products, thyroid meds, etc.  In fact, my whole household will go gluten free with me so I don't have to worry, except for when I travel.  What are your doctor visit and testing protocols once you start the healing process?  Will I need an annual endoscopy?  Monthly, quarterly or annual testing for antibodies, iron, magnesium, zinc, B12, D, etc?  Just trying to budget and plan.  Thanks! :)

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cyclinglady Grand Master
cyclinglady
Posted

Were you gluten free when you had the endoscopy?  Just wondering why you are gobbling up gluten for an antibodies test.  You would think they would have tested you the day you had the endoscopy (if they suspected celiac disease) or at least had you do it a few days later.     If you had been gluten free, most GI celiac-savvy, doctors require 2 to 3 months of consuming gluten (University of Chicago Celiac Website).  It can take that long for the antibodies to build.  

As far as post testing, that is typically an individual experience.  You can ask for vitamin and mineral deficiencies, but most of those will resolve quickly on a gluten free diet.  In my case, my doctor just kept checking my thyroid (it was swinging hyper to hypo) and my anemia (I have a genetic anemia, plus being iron deficient).  The anemia resolved in just a few months.  So, I knew the diet was working and I had been cooking for my gluten-free hubby for 12 years so I knew the gluten-free diet well.    I also had a bone scan after I fractured two vertebrae doing NOTHING two months after my initial diagnosis.  I did not get antibodies testing until two and half years later when I was glutened.  My symptoms were different from when I was diagnosed (just anemic), so I was not sure I was actually glutened (but I had been :().  

The University of Chicago does recommend testing three to six months after the initial diagnosis: 

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  Maybe I will have another endoscopy, like member Peter, on my five year anniversary!  

  • 2 weeks later...
frieze Community Regular
frieze
Posted

i too, am wondering why you are having the blood tests after a positive endo?  i thought the endo was the "gold standard"?

cyclinglady Grand Master
cyclinglady
Posted
3 hours ago, frieze said:

i too, am wondering why you are having the blood tests after a positive endo?  i thought the endo was the "gold standard"?

It is in conjunction of a positive blood test.  Villi damage can be caused other other things like tropical sprue, milk or soy intolerance.  I am trying to find the U of Chicago's list, but they have revamped their website.  

  • 2 weeks later...
sdlane Rookie
sdlane
Posted
  • Author

So I ended up with plenty of antibodies.  Got my labs back this week.  Thanks for your replies.  The GI I see at University of California, San Francisco also ordered a colonoscopy.  That was fun..not!  Maybe that was to rule out Crohn's?  Regardless, it's official. :) 

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      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
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      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
    • Colleen H
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