69 year old female newly diagnosed

[Oldturdle]

What a wonderful web site!  What a resource for a newly diagnosed celiac.  I am a 69 years old female, and a few months ago underwent an EGD to try and diagnose my silent GERD symptoms.  A duodenal biopsy at that time revealed celiac sprue.  I had never had any bad GI symptoms before in my life, just occasional bloating and gas which I did not worry about.  Subsequent lab tests revealed, along with the celiac gene, a tissue transglutamina IGA of >2,500.  The norm for this test was <14.9.  Two months after being on a gluten free diet, my TTIGA was 684.  Is this an exceedingly high result for a newly diagnosed celiac my age?  Are my numbers coming down fast enough?  When, if ever, could I hope to reach normal?  Also, do normal lab results imply your intestines are healed, and your gluten free diet is adequate for the job?  I would love to hear some input.  Thank you!

[GFinDC]

Hi OT,

A decrease in antibodies  is a good thing.  It may take several months for them to get back to normal levels though.  Your gluten-free diet is key to improvement and healing.  i suggest you stick with meats, veggies, eggs, nuts and fruit for several months.  Also avoid oats and dairy.  Whole foods are safer than processed foods. 

[Scott Adams]

Welcome to the forum! 

Wow, 2,500 is a very high reading! I agree with @GFinDC that it can take months for this to go down, but the single most important thing is to not eat any hidden gluten, including cross-contamination at restaurants, which is quite common. This article may be helpful:

 

[RMJ]

Yes >2500 is exceedingly high.

Your numbers are coming down very nicely, especially for just two months gluten free.  Who knows how far above 2500 your values were when diagnosed!

How long it takes to reach normal varies from person to person, and can also depend on how strict your gluten free diet is.

The lab tests are not FDA approved for monitoring recovery, although many doctors use them that way. Once values are in the normal range, It is extremely likely that the gluten free diet has been adequate and that there is significant healing, although some studies have shown residual villi damage even when antibody levels have normalized. Again, that varies from person to person.

Welcome to the forum!

[DJFL77I]

On 4/2/2021 at 5:13 PM, Oldturdle said:

tissue transglutamina IGA of >2,500.  

wow...

good sign that its dropping fast though

did the biopsy show villi damage?   have you lost weight?

 

[Oldturdle]

10 hours ago, Gluten-Sucks said:

wow...

good sign that its dropping fast though

did the biopsy show villi damage?   have you lost weight?

 

Thanks for your interest!  My biopsy said, "severe chronic duodinitis, with features possitive for celiac sprue."  I think the Dr. only took two duodenal biopsies, though, because he was not particularly looking for celiacs.  Chronic gastritis was also found, and the doc is pretty sure the "silent gerd, (constant sensation of a lump in the throat, and lots of phlem,) will resolve with the gluten free diet.  No change yet, though.  As far as weight loss goes, I had very slowly lost 25 pounds over about 20 years.  I thought it was cool that a woman my age could eat anything I wanted and not gain weight.

[Oldturdle]

On 4/2/2021 at 2:29 PM, GFinDC said:

Hi OT,

A decrease in antibodies  is a good thing.  It may take several months for them to get back to normal levels though.  Your gluten-free diet is key to improvement and healing.  i suggest you stick with meats, veggies, eggs, nuts and fruit for several months.  Also avoid oats and dairy.  Whole foods are safer than processed foods. 

Thanks for your reply and support!  I am doing my best with the gluten free diet.  My husband and I are retired full time RV travellers, so our kitchen is small.  We ear gluten free, except for his bread, crackers, and cereal, which he keeps sealed.  We do share a toaster, but I have my side and he has his side, and we keep it wiped off.  When we go out to eat, (infrequent,) I order gluten free, and take a couple GluadinX for the cross contamination.  I hope this is good enough.  Since I seem to be a "silent ciliac," I do not know if I have consumed any gluten.

[Oldturdle]

On 4/2/2021 at 2:29 PM, GFinDC said:

Hi OT,

A decrease in antibodies  is a good thing.  It may take several months for them to get back to normal levels though.  Your gluten-free diet is key to improvement and healing.  i suggest you stick with meats, veggies, eggs, nuts and fruit for several months.  Also avoid oats and dairy.  Whole foods are safer than processed foods. 

Thank you so much for your input.  It is nice to know that there are those who have "successfully gone before," and helped pave the way for us newbies.  I do the best I can with the gluten free diet.  This is challenging since my husband and I are retired and travel full time in our RV.  We try to keep his gluten foods well sealed and away from mine.  I seem to prefer whole grains to the processed gluten free bread products.  When we go out to eat, I order gluten free items, and take a couple GliadinX for the contamination.  Since I am a silent celiac, I can't tell if I have been exposed to gluten. Again, thanks.

[Oldturdle]

On 4/2/2021 at 5:57 PM, Scott Adams said:

Welcome to the forum! 

Wow, 2,500 is a very high reading! I agree with @GFinDC that it can take months for this to go down, but the single most important thing is to not eat any hidden gluten, including cross-contamination at restaurants, which is quite common. This article may be helpful:

 

Wow!  I am so honored that the "Celiac Guru" himself responded to my post.  Your web site is amazing.  I also joined the National Celiac Association out of Boston, but their site is not nearly as helpful as yours.  The article on gluten free eating you referred me to was very helpful.  Thank you!

  

[Kate333]

Hi and welcome to the website.

I, too, am a relative "newbie".  Dx in late 2019 and STRICTLY gluten-free since March.  GFinDC is spot on in recommending limiting your diet to fresh meats, fruits, veggies to expedite your healing and improvement in your G antibody blood test results.  If you've been on the gluten-free diet for only 2 months, your current #s sound about right.   When will your #s return to "normal"?  I believe TTG #s typically drop by about 50% every 2-3 months or so on a strict gluten-free diet.  That's been my experience.  My TTG level was 224 at diagnosis.  My last reading in January was 38, and I hope to be near normal for my next test in April or May.  Hopefully, with diligent avoidance of G, you will be close to "normal" by the end of next year.  And once your numbers are "normal" and your gut is healed, it's important to maintain the gluten-free diet for the rest of your life to avoid the risk of any further damage to your body.

A word of advice:  since your initial reading was so high, it is really vital to take steps to eliminate inadvertent exposure to G.  This can be done by avoiding sharing food, stoves, microwaves, utensils, plates with others who cook/eat gluten food or products.  I would suggest using separate toasters as G crumbs can still stick to the sides/bottom of the toaster and get imbedded in, or "cross-contaminate" (CC) your food, no matter how carefully you clean or use them.  For now, I would also suggest you avoid processed foods and restaurants altogether--even packages and restaurants touting "gluten-free menus".  These can be a source of CC for most folks with celiac disease.   Finally, don't be fooled into a false sense of security by continued lack of GI or other symptoms.  Even so-called "silent" Celiacs can have extensive gut damage and not even realize the harm done until they get finally get tested.

Best of luck on your healing journey!

[DJFL77I]

12 hours ago, Oldturdle said:

We do share a toaster,

you can't share a toaster  if he's making wheat bread in it

[Kate333]

On 4/5/2021 at 2:20 AM, DJFL77I said:

you can't share a toaster  if he's making wheat bread in it

Yes.  Toasters cost about $15 at Target or Walmart--a very small price to pay to promote healing and avoid further gut damage.    

[Oldturdle]

21 hours ago, Kate333 said:

Yes.  Toasters cost about $15 at Target or Walmart--a very small price to pay to promote healing and avoid further gut damage.    

We bought our toaster at Walmart!  The problem is we live in a RV and counter space is minimal.  I tried those toaster bag things, and could not get the bread to toast.  It just got very hot.  I have my dedicated side of the toaster, and we always wipe the top of the toaster off in the direction that avoids spilage of gluten crumbs down my "hole."  This is the best we can do.  I read in some recent research that most celiacs can consume a piece of bread the size of half of a pencil eraser per day, as long as it was spread through out the day.  When you think about it, this is quite a few crumbs to accidentally consume, considering that you are doing everything you can to avoid them.

[Oldturdle]

On 4/4/2021 at 9:10 PM, Kate333 said:

Hi and welcome to the website.

I, too, am a relative "newbie".  Dx in late 2019 and STRICTLY gluten-free since March.  GFinDC is spot on in recommending limiting your diet to fresh meats, fruits, veggies to expedite your healing and improvement in your G antibody blood test results.  If you've been on the gluten-free diet for only 2 months, your current #s sound about right.   When will your #s return to "normal"?  I believe TTG #s typically drop by about 50% every 2-3 months or so on a strict gluten-free diet.  That's been my experience.  My TTG level was 224 at diagnosis.  My last reading in January was 38, and I hope to be near normal for my next test in April or May.  Hopefully, with diligent avoidance of G, you will be close to "normal" by the end of next year.  And once your numbers are "normal" and your gut is healed, it's important to maintain the gluten-free diet for the rest of your life to avoid the risk of any further damage to your body.

A word of advice:  since your initial reading was so high, it is really vital to take steps to eliminate inadvertent exposure to G.  This can be done by avoiding sharing food, stoves, microwaves, utensils, plates with others who cook/eat gluten food or products.  I would suggest using separate toasters as G crumbs can still stick to the sides/bottom of the toaster and get imbedded in, or "cross-contaminate" (CC) your food, no matter how carefully you clean or use them.  For now, I would also suggest you avoid processed foods and restaurants altogether--even packages and restaurants touting "gluten-free menus".  These can be a source of CC for most folks with celiac disease.   Finally, don't be fooled into a false sense of security by continued lack of GI or other symptoms.  Even so-called "silent" Celiacs can have extensive gut damage and not even realize the harm done until they get finally get tested.

Best of luck on your healing journey!

Thank you so much for your lengthy reply.  It is always encouraging to get advice from people who have seen good results from their gluten free diet.  As I have mentioned, we live full time in our RV, and kitchen/counter/cabinet space is minimal.  We do the best we can, and as long as my numbers are going down, that will have to be enough.  I do hope Gliadinx is all that it is touted to be.  I do take one or two before resturant meals, and hope for the best.  For example, if I have regular french fries with my burger wrapped in lettuce, I would take 2 gliadinx to combat the cross contamination.

[DJFL77I]

most people never heal because they don't take the diet and condition seriously enough.. 

you don't have lactose intolerance where you can just take an enzyme pill before eating dairy...... you cant simply take some gliadinx and eat out at restaurants and expect to not get gluten..  even a little bit of gluten will cause problems...  you need to be 100% strictly gluten free.

Your antibody levels were off the charts high...   which may mean you might be more sensitive than usual 

[Oldturdle]

12 hours ago, DJFL77I said:

most people never heal because they don't take the diet and condition seriously enough.. 

you don't have lactose intolerance where you can just take an enzyme pill before eating dairy...... you cant simply take some gliadinx and eat out at restaurants and expect to not get gluten..  even a little bit of gluten will cause problems...  you need to be 100% strictly gluten free.

Your antibody levels were off the charts high...   which may mean you might be more sensitive than usual 

Thanks for the concern.  However, since my numbers seem to be dropping so nicely,I think I will continue what I am doing, and make stricter changes if the TTIGA does not continue to fall rapidly.  My next test will be  early July.  My bloating, gas and large soft BM's are much more normal.  I must be doing something right.  I eat food that does not list any glutin containing ingredients, but not necessarily say "gluten free."  (Canned chili, peanut butter, etc.")  I have a friend diagnosed with celiacs over 10 years ago, she eats like this, and her numbers have been normal for years.  Of course, I realize everybody is different.  Thanks again.  

 

[Kate333]

On 4/7/2021 at 3:02 AM, DJFL77I said:

most people never heal because they don't take the diet and condition seriously enough.. 

you don't have lactose intolerance where you can just take an enzyme pill before eating dairy...... you cant simply take some gliadinx and eat out at restaurants and expect to not get gluten..  even a little bit of gluten will cause problems...  you need to be 100% strictly gluten free.

Your antibody levels were off the charts high...   which may mean you might be more sensitive than usual 

Agreed.  It's human nature to find change difficult.  But it's also human nature to be easily lulled into a false sense of security and rely on it as an excuse to continue pre-diagnosis habits that caused illness in the first place and continue to damage the body.  I also see that a lot in my work with people who have morbid obesity, HBP, and/or diabetes.  They dutifully wash down triple bacon cheeseburgers with their Diet cokes, insulin or HBP meds thinking they are protected.