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Member Since 13 Mar 2009
Offline Last Active Private

#903936 Alcohol

Posted by on 26 January 2014 - 07:57 AM

And Jagermeister is 70 percent!


Anyone who mixes Jager with tequila, rum and whiskey is going to feel pretty darn bad for more than a day - celiac or not.


Just my opinion here...but if you want to let loose...go for it, but try to stick to one type of alcohol.


Drink lots of water.


Hope you feel better soon!

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#903317 Family Glutening Me In gluten-free Household

Posted by on 20 January 2014 - 06:58 PM

I guess I'm not understanding either...if the home is gluten free how did dropping the cap get gluten on it and when it dropped....how did anything get inside the cap?


If your brother said it only touched it a little...was he talking about it touching the floor? or obvious source of gluten?


Any family that has removed gluten to the extent mentioned for a family member that is only living there part time seems to be aware....even with awareness....none of us are perfect.  


You will likely be accidentally glutened as it does happen, but if you are having frequent reactions...I'd look to other possible food intolerances.  When I removed gluten I replaced glutenous items with other foods that I was unknowingly intolerant of.

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#901782 Mast Cell Activation Syndrome (Mcas)

Posted by on 06 January 2014 - 09:09 PM

Just because I've been researching this after eating what I thought was a completely low histamine diet and still had a reaction:  I found egg whites on a list of "foods with potential histamine releasing effects":  Also here is an in depth explanation of why eggs may be bad for some (although it does not properly cite sources- so take it for what it's worth!): http://www.thepaleom...tocol-eggs.html


In a private conversation with Dr. Jess (man, her ears must be RINGING!) I asked her about the eggs and she said she had a strong reaction to them at her worst. I had eggs for four consecutive mornings before the last reaction (during which I was pumping antihistamines :angry: ). I itched on day 3 and had full out hives through the antihistamines on day 4.  Just a warning for those just now figuring this out  :) How many people on here have said they can't eat eggs?!?!  I didn't think I had a problem with them before now and hopefully I'll be able to reintroduce them later.  


After that experience, I decided to just say "screw you" to food.  I'm trying the paleo Autoimmune Proticol (AIP) for 30 days (without high histamine foods) and seeing if it resets my system.  I'm starving, but trying to get the hang of it.  No grains, no nuts, no seeds, no eggs, no night shades, no, no, and no.  This better work.  It resembles Gotta Ski's diet, so maybe there is something to it...


Oh man...it is tough to remove all the no, no's....I can tell you it gets easier...


I started an elimination diet geared to Autoimmune Disease back in August 2011 because we couldn't identify any specific additional intolerances during my first two years gluten free -- LOL...upon trial I ended up intolerant of everything except eggs (which I lost later to histamine) and butter...wish I could tell you I got foods back, but I failed all trials miserably...at least all my trials revealed clear reactions that I never would have sorted out had I not removed everything at once.  Do make sure when you start re-introducing foods that you do it one food item (not group) with at least three days between each trial as some reactions are not immediate.  I started those trials three weeks after I removed everything (took about 4 days to notice huge improvement).


If you do find improvement during the elimination -- might want to consider leaving high histamine and histamine inducing out to trial them last.  Kinda interesting back in the very first weeks of my elimination diet I ate an avocado (hadn't removed as I had no idea about histamine) and had immediate swelly belly to the point of looking about 8 months pregnant...never understood why I lost them until the hista connection.


The good news is most folks are able to add many items back in during the initial trial and even more after 6 months.  That you are removing histamines long before I figured it out...one year after my initial elimination diet,,,is really a very good plan if you suspect histamine intolerance or any mast cell disorder....not easy but worth it.


Now about this starving dealio....besides meat and standard veggies...you do know sweet potatoes, yams and purple sweet potatoes are not nightshades...I eat them often. Also, Zu-noodles....zucchini spiralized into a pasta like substance and other squash - spaghetti and butternut are my staples...butternut squash fries roasted in the oven are yummy.  Oh...fresh herbs really help ... I generally use cilantro or basil...but all herbs help spice things up :)


I can tell you even though I miss many foods I can say without a doubt I wish I would have known to try removing everything at once - including histamines - much earlier.


I am crossing what I got that you improve during your 30 day reset and are able to regain many, many, many, many, many - did I say many? - foods that you have removed.


Hang in there -- you can do this!!!

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#894607 Gluten Sensitivity - Concentration

Posted by on 04 November 2013 - 09:08 AM

Regardless of diagnosis, the fact that you had many symptoms improve after removing gluten indicates you can't tolerate it.  


Make sure you are not getting any gluten from processed foods and are preventing cross-contamination.  If you haven't read this thread - it contains valuable information regarding getting the gluten out:


Newbie Info 101 - Celiac Disease - Coping With - Celiac.com Celiac Disease & Gluten-Free Diet Forum


Additionally, have you had any nutrient testing to see if you are deficient in any vitamins or minerals?


Finally, it can take time.  That you have had many symptoms improve is encouraging...it just may take longer to overcome the fatigue.


Hang in there :)

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#894007 How To Investigate A Celiac Diagnosis W/o Eating Gluten?

Posted by on 31 October 2013 - 10:02 AM

I agree with both gene test for you and complete celiac antibody panel for the kids.  I was initially tested for genes as my children tested mostly negative with a wide variety of celiac symptoms...turned out I have two copies which means all of my children have at least one - it was important information for our family.


Talk to your primary doctor and explain the reaction when you accidentally ingest gluten thus making a gluten challenge dangerous for your health.  They may be able to order the gene test for you thus have it covered by insurance.


Good Luck to you and your family :)

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#892680 What's The Gluten Summit?

Posted by on 19 October 2013 - 08:36 PM

and out of curiosity, I looked up this guy Dave and found

The Financial Times described Dave as a “bio-hacker who takes self-quantification to the extreme of self-experimentation” after he upgraded his brain by 20 IQ points, lowered his biological age, and lost 100 lbs without using calorie-control or exercise.


Nice...we can get a scientific celiac update along with a map to the fountain of youth ;)
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#891221 Help! Crazy Numbers On Blood Test Does Not Match Symptoms. Doctor In His...

Posted by on 08 October 2013 - 04:18 PM



No, it would not be possible for 4 positive antibody tests along with an endoscopic biopsy to all be incorrect.  That your son has gained weight is confirmation of improvement on the gluten-free diet even if all his symptoms have not yet resolved.


I think what this GI is saying is these other unresolved symptoms are not related to celiac.  They can be, but they can also be related to other autoimmune disorders so it would be prudent to be seen by Rheumatology to rule out any other causes while hopefully continuing to improve gluten-free. 


With regard to running another celiac antibody panel -it is normal to run subsequent antibody tests at 3 or 6 months and then annually thereafter.  Of note...your son had very high DGPs and tTG-IgA so it can take time for these to come completely down...they should be much improved at 4 months, but may take longer to come all the way down. 


Hang in there Mom and family :)


Edited to add this link to a comprehensive list of symptoms associated with Celiac Disease:



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#891196 Gluten Challenge Question

Posted by on 08 October 2013 - 11:51 AM

Welcome Marion!


You should call your doctor's office to report this.  Seizures can be serious and should be addressed by your doctors.


Hang in there :)

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#890981 Marathon Running Before/after Going gluten-free

Posted by on 06 October 2013 - 01:35 PM

Wow, thanks guys :)



Kassia and GottaSki, thanks for the tips on gels. I get on OK with Gu gels but really like Clif bloks so that's a real disappointment! Not impressed with their labelling though - it isn't anywhere on the packaging or easy to find on their website. Gu chomps it is then!

GottaSki, funny you should mention 'listening' to my body...at mile 18 EVERYONE running around me was listening to my stomach roaring. Funny to look back on now!



I'd imagine things will be much quieter out there now ;)


we've been using Gu for a long time...got a lot of Clif Shot freebies during bike races...bummed they are not safe...more bummed that Gu doesn't have the great little package with the leash for when you have torn it open. 

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#890852 Need Help Interpreting Symptoms And Lab Tests

Posted by on 05 October 2013 - 09:39 AM

Welcome Emme!


With your history you could have Celiac Disease.


I would make sure you have your docs run a full Celiac Antibody Panel -- You had what are commonly used as screening tests by many doctors. 


Total Serum IgA (you had this)


tTG - Both IgA and IgG (you had the IgA)

DGP - Both IgA and IgG


Celiac Disease can prevent absorption of nutrients, so nutrient blood tests can be another piece of the puzzle.


B12, D, K, Iron, Ferritin, Copper and Zinc


Complete Metabolic Panel can also reveal some clues. -- if you can see your CBC online, check to see if any of the numbers are borderline.


It is important that you continue to eat gluten until all testing is complete - including endoscopic biopsy should you and your doctors decide to have this done.


Once you are certain testing is complete - than regardless of results remove ALL gluten for 3-6 months (6 is better) to monitor symptom improvement.  Non Celiac Gluten Intolerance has many of the same symptoms as Celiac Disease yet there are currently no tests that can indicate NCGI.


Hang in there and keep asking questions :)

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#890803 New - Abdominal Bloating

Posted by on 04 October 2013 - 05:43 PM

I figured that out, but I am a complete incompetent when it comes to these things and haven't

figured out how to fix it yet!  Thanks for your response.  I might get myself into the computer age one of these days after all.  lol




I've moved your post to it's own thread so that more folks can respond.

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#890622 Cold Snowy Winter Comin'............ Git Ready

Posted by on 03 October 2013 - 12:58 PM

Did somebody say snow :)

'Course I don't have to shovel it...but do have to drive to play in it!
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#888644 3 Months

Posted by on 16 September 2013 - 02:16 PM

Fantastic News :)
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#884485 Should I Get The Endoscopy?

Posted by on 15 August 2013 - 05:04 PM

TurdFerguson15 said he was already gluten free, which means a retox would be needed for any testing to be done at this point.

But good to learn that less gluten may be required than what others have said elsewhere.


Yes, gluten should not be removed prior to diagnosis -- but some do have an endoscopy after gluten is removed without a challenge as they are not able to tolerate the challenge to take a look at damage and/or biopsy.


I was answering only the question as posed.  This member said they already know they are intolerant -- which I took to mean they can not safely ingest gluten.


I already said perhaps I was mistaken, but I was answering this particular question -- not a proper diagnosis/gluten challenge procedural question.


I also second Nicole's question -- was a complete celiac antibody panel competed?  If not this should be completed as well.  Whether a gluten challenge is possible for this person and how long they have been gluten free would determine whether they should re-introduce gluten and for how long.

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#884438 Second Guessing Diagnosis

Posted by on 15 August 2013 - 08:58 AM

Was this a gasterenterologist that specializes in Celiac Disease? - sadly not all do.

With deficiencies, AI symptoms and a positive DGP I would remove all gluten after the biopsies...regardless of results - then retest the celiac antibodies and nutrients at six months and a year. Sometimes AI symptoms take longer than digestive symptoms to resolve so the blood can show if you are no longer producing antibodies and are absorbing nutrients better.

Hang in there...either way give living completely gluten-free the opportunity to improve your health.

Ps...we do have members that were diagnosed by biopsy with ALL negative antibodies...not everyone produces them and you do produce one very specific to gluten already...I wouldn't wait for the others to become positive.
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