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@Kate Murray,

What did the doctors prescribe for your daughter's elevated tryptase?  Antihistamines?  Steroids?  

Is your daughter following a low histamine diet like the Autoimmune Protocol diet (Dr. Sarah Ballantyne)?  

Does she still eat processed foods?  Dairy?

Hi @knitty kitty MCAS and SIBO were both tested for and ruled out. Short term she was treated with steroids and high doses of antihistamines but we elected to discontinue that protocol because the side effects of adding more medication was not the answer for her sensitive body. As an example of how we began to discover and isolate “natural flavor”: In her food log, she ate a lettuce wrap (iceberg lettuce only) with fresh cucumber, carrots and plain (store bought) hummus (all organic ingredients except hummus). Many more examples where she ate only fresh fruits and vegetables and then consumed one “condiment” for which we scrutinized ingredients and over and over kept tracing it to the fact that “natural flavor” was derived from barley (ie:ketchup, mayo, hummus, and even brown rice syrup). In her case, her body was so sensitive Thad indeed we realized that she cannot consume these. It’s different if the condiment or food contains what it’s supposed to. Eggs, vinegar, salt, great. Add in the hidden ingredients (not to mention all the other preservatives etc.) and it is crippling. The biggest problem in American society is that people thing they are making healthy choices but the largest food manufacturers are greedily using science to profit while the rest of society continues to get sick. It’s an outrage and when regular people like me are searching for answers, finding conflicting information online seems to be the norm.  I too have resorted to only reading academic journals and papers lately. I foresee a new media emerging over the next 5, 10, 20 years, as the public sifts through all the blogs of opinion and journalism aims to uncover truth. It will be interesting to watch. 

@Kate Murray, I want to return to a statement you made in your first post:

"While the product may contain “less than 2%” this could be okay for those with an intolerance to gluten, but for true Celiacs Disease, the 20ppm is still far too high and causes reaction."

That is a patently false notion. "True Celiacs" is not defined by those who react to less than 20ppm of gluten." There are many of us who have tested positive for celiac disease through blood antibody testing with confirmation from a positive biopsy who do not react to less than 20ppm of gluten. In fact, we are the majority of the celiac population. You seem to be confused about the difference between celiac disease and NCGS (Non Celiac Gluten Sensitivity). The difference is not the degree of sensitivity to gluten exposure. The difference is that celiac disease is an autoimmune reaction and NCGS is not. With celiac disease, the immune system attacks the body's own tissues. In this case, it attacks the lining of the small bowel when gluten enters the cellular spaces of the lining. This causes inflammation and over time, damages the lining. This does not happen with NCGS. We can test for celiac disease by checking the blood for the antibodies that attack the gluten and cause the inflammation. We can also check for celiac disease by biopsying the lining and inspecting it for damage under a microscope. There is no testing for NCGS. Celiac disease must first be ruled out to arrive at a diagnosis of NCGS. Reaction thresholds to different concentrations of gluten is not what distinguishes celiac disease from NCGS.

@Kate Murray,

I sympathise wholeheartedly.  I was as sensitive as you describe your daughter to be.  I found the Autoimmune Protocol Diet most helpful.  The Autoimmune Protocol diet (AIP diet) was designed by a doctor,  Dr. Sarah Ballentyne, a Celiac herself.  

The Low Histamine AIP diet really helped improve my gut health.  Foods that are difficult to digest or are inflammatory are removed from the diet for several weeks, allowing the intestines to begin healing.  

Foods high in Lectins are difficult to digest.  Grains and pseudo grains are removed from the diet.  All processed foods are excluded.  Certain fruits and vegetables are even excluded, nightshades, nuts, histamine-releasing foods like citrus fruits, leftovers, etc.  

Following the AIP diet was like a vacation for my digestive tract.  Eating only well cooked meat, veggies (crock pot meals were a staple) and some fresh fruit, I felt better within a short period of time, and was able to slowly add other foods back into my diet one at a time while checking for reactions.  

I could not eat iceberg lettuce and raw veggies.  Raw veggies were way too difficult to digest.  I avoided certain spices that triggered reactions. 

I supplemented my diet with vitamins and minerals I knew I wasn't absorbing sufficiently, especially the B vitamins and Thiamine.

Thiamine helps mast cells not to degranulate.  I took Thiamine in the form Benfotiamine which has been shown to promote intestinal healing.  Supplementing with B Complex, magnesium, Vitamin D and the other fat soluble vitamins is really beneficial.  I studied nutrition before earning a degree in Microbiology because I wanted to find out what vitamins were doing inside our bodies.  

I agree that most food production companies do not have the consumer's best interest at heart.  They are looking at their own bottom line.  I boycotted process foods for years while I regained my health.  I shopped the produce department for fresh fruit and veggies, and bought unprocessed meat.  It does take a mental adjustment because we've been brainwashed into thinking processed foods are acceptable, but most are very unhealthy.  

I do hope you and your daughter will try the AIP diet.  Feel free to start a new thread if you would like.  We're all together on this journey.  

@trents I think you misinterpreted my intention with that statement, I was indeed differentiating between people who truly have celiacs disease (aka all the things you mentioned, biopsy, elevated TTG, genetic markers) vs gluten sensitivity. I was merely intending to say that in my experience of knowing people with gluten sensitivity, they seem to tolerate (seemingly the standard up to 20ppm) while those I know who actually have a celiacs disease diagnosis do not tolerate. Sorry for any confusion. 
 

@knitty kitty Thank you, that is helpful to know about your journey to recovery and nutritional background. Agree 100% that whole foods and vitamins and minerals will be the most helpful for her. I’m definitely on a quest to find brands of vitamins that are suitable as well. These small nuances have been very challenging. 

@Kate Murray, thanks for your clarification. True confession here. I have a tendency to be hard-nosed and onery on this forum at times and to get hung up on details rather than seeing the big picture of what another may be trying to communicate, i.e, to miss the forest for the trees. We see so much misinformation and so many misconceptions shared on this forum and there is still a lot of that out there in the wild, even in the medical profession. So, sometimes I jump to quick and pounce too hard when I sense that is happening in a post. So, I must apologize if I have treated you harshly. I probably came across that way.

You could be correct in stating that in your experience, those with gluten sensitivity are less sensitive to hidden gluten. I have never given this much thought. I would love to see someone do some studies on this. I have never seen any data addressing this question so, I won't offer an opinion on it. However, I do suspect that in the actual celiac population, one important factor in determining sensitivity to hidden amounts of gluten is the genetic profile of the person in question. Do they have the DQ2 or the DQ8 gene or do they have both? If they have one or the other, are they homozygous or heterozygous for that gene? I think we do know that those in the general population who possess one copy of the DQ2 gene are 10x more likely to develop celiac disease than those who don't. 

@trents no worries. Agree, I think a study on this would be interesting. My daughter is DQ2.2 (homozygous).