Allergist recommendations? Anyone?

[Lotte18]

Hi Scott,  

Does one's TTg level correlate to the area size of villi destruction?  I wonder if we heal in patches as well.  It would make a difference as to when certain foods can be tolerated, yes?  

As discussed earlier, I went off rice.  It seemed to help and yet...my allergist says I should try it again to see what happens.  Can you recommend a sure bet gluten-free brand.  I just checked Lundgren.  While they are certified by GFCO, they say their facility is not gluten-free.  They just store the gluten-free rice separately.  Can gluten be washed off rice?  

My allergist also said that since I was reacting badly to avocado, brussel sprouts, broccoli, just about anything green, that the problem isn't allergies.  My GI says 10.6 is not an out of the woods number.  I have to be below 3.9.  I have NO idea what I'm eating at this point that has gluten in it.  So I guess another question is, how long do antibodies take to clear after there's no gluten?  And from there I wonder what the average time is for the gut to heal.  I'm starving for something green to eat!

 

 

[Scott Adams]

Antibody levels will start dropping as soon as you go gluten-free, but it can take months for them to get into the normal range again, but being 100% gluten-free is critical for this to happen. In some people TTg levels may correlate with gut damage, but not in everyone. We’ve had people here who had very high levels, but negative biopsy results. In some people there is some evidence that cows milk protein can also affect TTg levels, but the study was small. If your levels stay high months after going gluten-free, you may want to go dairy-free for a while to see if that helps.

[MADMOM]

On 3/30/2021 at 10:40 PM, Kate333 said:

Hi Lotte.  Welcome.  I can sympathize.   I have all kinds of allergies (I live in a large Northern Calif. city), including especially dust and, post-celiac disease diagnosis, dairy.  I constantly sneeze, eyes run, congestion, but find it honestly hard to discern whether my symptoms are due to food or dust, air pollution, pollen etc.  I did get a food allergy blood test panel but I understand those tests are not very accurate or reliable.  Probably cheaper to do an elimination diet and try to carefully track which foods you react to.   I also felt hungry all the time right after diagnosis.  Likely because I was so fearful about eating that I think I subconsciously cut back on the amount of food I consumed.   

Don't get discouraged about adapting to the new gluten-free diet.  It took me months to figure out all the nuances of how G is so widely used and "hidden" in so many processed foods as fillers, many times listed as weird ingredient names.  I ditched restaurants after they all closed during the CV quarantine (I have no interest in returning to them because cc is a huge issue and big risk, despite companies touting gluten-free menus).  After that, I couldn't handle the stress/hassle of constant label-reading, so I just simplified my life by buying, cooking and eating only fresh meat, veggies and fruit.  After that, my blood G antibodies started rapidly dropping.  BTW, your TTG #s are great!  As long as they are below 14, you are golden, because that is the normal range.  I started from a high of 224 (before diagnosis) to nearly 28 this past January and hope to get to 14 or lower by the summer.🤞

A word of caution about rice.  Make sure you buy only rice with a "certified gluten-free" label on the box.   I wouldn't get it from an open or shared grain bin at the store.  Minute Rice is a good gluten-free brand.  I've tried it on occasion and never had problems with it (other than weight gain from eating too many simple carbs).

Good luck on your healing journey!       

how long did it take for your levels to go from 224 to 28?  i’m about 4 months in and doing well - hoping i wll have results like that 

[Scott Adams]

There isn't a specific timeline that would be the same for everyone, and, of course, it varies greatly depending on how strict your gluten-free diet is. I recall that it took some people several months to a year to drop that much. Also, it seems that in some people casein sensitivity can keep TTG levels from dropping to normal levels, so some people may also need to go casein/cow's milk-free to achieve this.