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Member Since 05 Jul 2010
Offline Last Active May 21 2015 08:00 PM

#926764 Mast Cell Activation Syndrome (Mcas)

Posted by on 07 August 2014 - 05:11 PM



It will get better, I promise! I remember hitting a point about 2 years ago when I seriously wished that I would never have to eat anything again because I felt like I was getting sick from everything. Your kids will be okay. None of my kids seem to even remember that I was in such a bad place a few years ago.

As for bread, have you ever come across socca bread?


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#914628 Back Up Food

Posted by on 30 April 2014 - 07:33 PM


Zing Bars are gluten-free, soy free and dairy free. Can be ordered by the case on Amazon. I discovered them last year and they are my "go to" bar for traveling, working long shifts, etc. after getting tired of Larabars and Kind Bars.

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#910319 Rheumatology Appt Yesterday/lupus

Posted by on 25 March 2014 - 05:16 PM

Hi celiacandme,
I am Jess. I have not been on here much but your story worries me and I can't help speaking up.
Your abnormally elevated celiac antibodies and endoscopy with villous atrophy mean that you have celiac disease.
There is no scientific evidence that lousy causes villous atrophy, I was unable to come up with even a single case report.
You may have both lupus and celiac disease, but your rheumatologist seems to be misguided.
I was diagnosed as having atypical lupus about 10 years ago but refused the medications because my gut instinct was that the diagnosis was wrong (it was) and although I didn't know that I had untreated celiac at the time, things didn't add up.
I have never heard of a rheumatologist stating lupus medications without at least having the lab tests back to confirm lupus.
Just my 2 cents, I hope that I don't come across as being too bossy or assertive, just that I agree with what others have advised you.
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#901798 Mast Cell Activation Syndrome (Mcas)

Posted by on 07 January 2014 - 06:35 AM

THANK YOU Irish Heart and Dr. Jess!  I look forward to convincing my allergist to test me on Thursday.  Thanks to you both, I will go armed with scientific validation that MCAS exists and that I have many of the symptoms. 



Hi Shellie,

Good luck with your appointment. My allergist, who is also a friend of mine, did not initially believe that I could have MCAS because he had never seen a case of it before me (he actually had, but since he didn't know about it, he didn't know to evaluate his patients for it). Through my conversations with Dr. Afrin, who I am pretty sure did not invent the nasal spray, many doctors believe MCAS is very rare, but once they see a case or two of it, they will start to see it in their practices all of the time.

I feel that we are just at the beginning wave of awareness of this disorder, and the rates of diagnosis are much lower than even celiac disease. Please keep us updated on how your appt goes!


P.S. Also, just as an FYI, the 24 hour urine samples have to be chilled or kept on ice at all times, if you allow it to get too warm the results will be meaningless.

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#899461 Has Anyone Had Raynauds Syndrome Improve On Gluten Free Diet?

Posted by on 12 December 2013 - 07:37 PM

Hi Diana. I have had the same experience as Gemini, my Raynaud's has virtually disappeared since going gluten-free in 2010.

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#897374 Traveling Abroad - A Risk Factor For Celiac?

Posted by on 26 November 2013 - 07:38 PM

Hi glutenmaestro,

Welcome! Dr. Benjamin Lebwohl, one of the celiac researchers at Columbia University, just published a review of all that is known about risk factors for celiac disease and he did not include travel.

The link to his paper is here: http://www.ncbi.nlm....pubmed/24211288.


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#896973 Tested Negative For Celiac Gene...

Posted by on 23 November 2013 - 02:55 PM

Most people with celiac disease are DQ2/DQ8 positive, but it is possible to have it without the genes (depending on the source I've seen that between 1 and 4 percent of celiacs do not have of the main genes). I was diagnosed 4 years ago with celiac disease, then found out after the fact that I am DQ2/DQ8 negative. I am double DQ7. So is my mom, who also has celiac disease. There were a few scientific posters at the International Celiac Disease Symposium in Chicago in Sept. showing that celiac can occur in non DQ2/DQ8 individuals as well. Hope this helps!
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#896149 Amazing Lectures At The Gluten Summit

Posted by on 16 November 2013 - 12:23 PM

I ended up watching the day 5 video on colostrum and once again, the "reference" that we get is the speakers' anecdotal research. I am terrified by the idea of people with autoimmune diseases, like celiac disease, watching Dr. Keech's video and deciding to take bovine colostrum as a treatment. I take care of newborn and premature babies and it's scary enough to see how many so many babies are being birn with milk protein allergies/intolerances. This Summit is providing information about a medical treatment for which there is no long term follow up. I searched the entire pubmed database and there is not one published study on the usage of bovine colostrum in people with celiac disease or NCGS. I did find a study though where colostrum caused an increased risk of leaky gut in distance runners.
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#854135 Diagnosed As Gluten Intolerant, Is There A Correlation With Mast Cell Disorders?

Posted by on 15 February 2013 - 08:43 PM

I am looking into this (a link between Celiac Disease and mast cell disorders) right now. I have both Celiac Disease and a pretty severe sulfite allergy/intolerance which gets worse when I am exposed to gluten. There are a bunch of us on a sulfite intolerance forum who also have issues with gluten (some with Celiac Disease, some with non celiac gluten sensitivity, and some with IBS which is exacerbated by gluten). It seems like the link between the 2 may be the innate immune system being activated by gluten which causes more severe and quick "glutenening" symptoms than a normal autoimmune reaction should, and then typical "allergic" symptoms like hives, runny nose, itching, etc. when exposed to gluten (but without having positive allergy tests to wheat). It seems to be a very under-researched area, but, anecdotally, seems like it is going on in some of us with gluten issues who seem to be "super sensitive." I will report back (and probably post on my blog on here) when I have more info. on this and can synthesize it so it makes sense.
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#852275 Tips For Switching A Household Of 6 To Gluten-Free

Posted by on 04 February 2013 - 09:55 PM

A few more things I forgot: sweet potato fries and chips!
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#852274 Tips For Switching A Household Of 6 To Gluten-Free

Posted by on 04 February 2013 - 09:53 PM

I also cook for a family of 6 and we have made the transition to being totally gluten-free over the past few years. I am the only Celiac in my family but kept getting sick from cross contamination from sharing a kitchen.
We have drastically decreased our amount of gluten-free processed foods as well and that has helped a ton.
We eat whatever we can that is in season (right now in the upper Midwest, lots of squash!!) Also, potatoes, meats (lots of chicken), vegetables, fruits, rice. Lots of eggs, omelettes, etc. My kids love Chebe rolls. Most Mexican and Indian dishes can easily (and cheaply) be made gluten-free. We also eat a ton more fish than we used to. My kiddos actually like Tilapia and I've found a ton to do with it on Pinterest. There are tons and tons of cheap and easy gluten-free recipes for families on there as well.
It will get easier with time...
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#849498 To Go Full Out Or Not - Guten Sensitivity And The Fear Of Making It Worse

Posted by on 20 January 2013 - 09:53 PM

Someone please correct me if I'm wrong, but I remember hearing (or reading on here maybe) that if someone with NCGI continues to eat a high gluten diet, they could still suffer some damage in the small intestine from all the aggravation from the gluten, and eventually lead to leaky gut issues. Is that true? Just making sure I have my facts straight...

Giggleburger - it definitely sounds more of a mental thing, especially in social settings. Sure, its weird for all of us at first to not be included in all the seemingly wonderful things when we're out with gluten eaters, but you get over it. The more casual you are with "Thats ok, I cant eat gluten" the less of an issue it is. My sister is self-diagnosed NCGI, and everyone has accepted it and she's now completely gluten free. There are some great apps for smartphones that show you the places to eat in your area that offer gluten free options - there may be more than you think. Try "Gluten Free Registry" (its free) and you can check it out. At the end of the day, you have to make an active personal choice about doing what your body wants you to do, or what your social life suggests that you do.

Hi Laura, You are right. There is increasing information that non celiac gluten sensitivity is associated with neurologic problems well as autoimmune problems, likely through our innate immune systems. It is not as "harmless" of a diagnosis as it is billed to be!
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#847667 Hershey's Reeses Peanut Butter Cups Are Gluten-Free

Posted by on 08 January 2013 - 06:44 PM

I did contact Hershey's out of curiosity and they are now made on dedicated lines, so there is no longer a risk of cross-contamination during processing, like there used to be. This is an example of how much can change for a product in just a few years. It's also a reminder that we need to be diligent about calling companies and investigating if we are unsure.
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#734059 Tell Me About "gluten Defense" Pills

Posted by on 25 September 2011 - 06:53 PM

I just checked out these pills on the Enzymatic Therapy website (they are the manufacturer of "Gluten Defense"). The enzymes in these pills appear to be pancreatic enzymes. As long as one has a healthy pancreas, their own body makes all of these enzymes to start with. None of the enzymes in this pill specifically target gluten or gliadin, just proteins in general.
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#733716 P.f. Chang's

Posted by on 24 September 2011 - 04:17 PM

I am super sensitive and I have eaten at several different P.F. Chang's around the country (Boston, Chicago, Cleveland) without getting sick. Enjoy!
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