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cristiana

Shocked - elevated TTG

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Hello Friends

You have a very shellshocked celiac posting this message this morning and I could do with some encouragement.

Anyone who knows me will tell you I am a crashing bore when it comes to avoiding gluten.   I hardly ever eat out; I take my own food, and read this forum almost every day.

I had gastritis (not DX'd by endoscopy) earlier this summer and am finally off the ranitidine.  All the time it felt rather familiar to the time I was diagnosed with celiac disease but the doctors went with gastritis.  The pain under the sternum is almost gone now, unless I drink something a bit acid or fizzy, I no longer have heartburn - the only thing I do have is pain under my left ribs, where apparently my stomach is.

However, in the run up to this gastritis I was taking Floradix and I think I was inadvertedly consuming the one with gluten in it.  I had to stop taking it in the summer as even the smallest amount of iron supplement was hurting my stomach.  (Thinking about it it must have been the gluten, not the iron!)

Then it was October and a big birthday and my sister picked a lovely place to eat for my birthday, and we also ate in the hotel restaurant.  I ate one pasta dish which they assured me was gluten-free but it tasted suspiciously nice!  Another time I was offered egg and salmon - but it came with normal bread.  Thankfully I didn't eat the bread.  But I don't think these guys had a clue.  Normally I'd have caused a fuss but I it was my special birthday and everyone had gone to so much trouble.

Then my appointment came with a new consultant a couple of weeks later who asked why my other consultant who normally deals with me had not tested my TTG in the past five years.  I said, I haven't a clue - I wish he had.  My original consultant had continued to test all liver function etc though and all of these are now normal.  

So, anyway, this new consultant gave me the test and guess what.  It came back today in the late 80s. 

When I was diagnosed it was stratospheric - over 100 - so I suppose at least it has come down a bit - but this is of very little comfort to me.  The HA in my  is saying I must have some other disease (I hardly dare google) - or refractory celiac.  Again, don't want to google.

I wonder if the trip away and the iron supplement could have done this?

The only thing I can think is that when I was first diagnosed  I used to only eat things that said Gluten Free on the labels, that were authorised by the Coeliac Society, or whole foods.  More recently I've been trusting the new food labelling laws here which say gluten must be declared.   If I don't see gluten in the ingredients, I don't mind eating it.  That could be a big mistake I guess.

I do also sometimes bake things in an oven uncovered that sometimes has glutenous products in it.  Also I share a dishwasher with gluten consumers, and sometimes the dishes do feel like they aren't entirely clean.

The thing that is making me feel so sad is I always thought I took far fewer risks than some of my celiac friends and they've been tested for TTG and they are fine.

Booo  hoooo......  Please help someone - I don't know what to do.

 

 

 

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1 hour ago, cristiana said:

Hello Friends

You have a very shellshocked celiac posting this message this morning and I could do with some encouragement.

Anyone who knows me will tell you I am a crashing bore when it comes to avoiding gluten.   I hardly ever eat out; I take my own food, and read this forum almost every day.

I had gastritis (not DX'd by endoscopy) earlier this summer and am finally off the ranitidine.  All the time it felt rather familiar to the time I was diagnosed with celiac disease but the doctors went with gastritis.  The pain under the sternum is almost gone now, unless I drink something a bit acid or fizzy, I no longer have heartburn - the only thing I do have is pain under my left ribs, where apparently my stomach is.

However, in the run up to this gastritis I was taking Floradix and I think I was inadvertedly consuming the one with gluten in it.  I had to stop taking it in the summer as even the smallest amount of iron supplement was hurting my stomach.  (Thinking about it it must have been the gluten, not the iron!)

Then it was October and a big birthday and my sister picked a lovely place to eat for my birthday, and we also ate in the hotel restaurant.  I ate one pasta dish which they assured me was gluten-free but it tasted suspiciously nice!  Another time I was offered egg and salmon - but it came with normal bread.  Thankfully I didn't eat the bread.  But I don't think these guys had a clue.  Normally I'd have caused a fuss but I it was my special birthday and everyone had gone to so much trouble.

Then my appointment came with a new consultant a couple of weeks later who asked why my other consultant who normally deals with me had not tested my TTG in the past five years.  I said, I haven't a clue - I wish he had.  My original consultant had continued to test all liver function etc though and all of these are now normal.  

So, anyway, this new consultant gave me the test and guess what.  It came back today in the late 80s. 

When I was diagnosed it was stratospheric - over 100 - so I suppose at least it has come down a bit - but this is of very little comfort to me.  The HA in my  is saying I must have some other disease (I hardly dare google) - or refractory celiac.  Again, don't want to google.

I wonder if the trip away and the iron supplement could have done this?

The only thing I can think is that when I was first diagnosed  I used to only eat things that said Gluten Free on the labels, that were authorised by the Coeliac Society, or whole foods.  More recently I've been trusting the new food labelling laws here which say gluten must be declared.   If I don't see gluten in the ingredients, I don't mind eating it.  That could be a big mistake I guess.

I do also sometimes bake things in an oven uncovered that sometimes has glutenous products in it.  Also I share a dishwasher with gluten consumers, and sometimes the dishes do feel like they aren't entirely clean.

The thing that is making me feel so sad is I always thought I took far fewer risks than some of my celiac friends and they've been tested for TTG and they are fine.

Booo  hoooo......  Please help someone - I don't know what to do.

 

 

 

First thoughts are you might have gotten glutened at that dinner but having still raised antibodies.....I would think more along the lines of low dose CC over time....perhaps every below 20ppm just constant dosing could be causing ....god knows I get issues from "gluten free" food that still have low doses of gluten -_- just confirmed that over a week ago. The symptoms slowly set it in with nothing screaming "glutened" or violent. Just slow distention, D, etc. that set it slow but surely....Unsure on your reactions. But consider making the home completely gluten-free to eliminate all gluten. I keep thinking on dishwashers...sure they clean stuff but many high efficiency ones...start the next prewash with the rinse water from the last cycle....and then if you put a completely gluten covered dish in there....then it just slings gluten water all over everything...never really cleans it all off.....perhaps I am paranoid but makes me want to burn the damn things lol......Random idea, they need one of those anti gluten enzyme tablets you put in a dishwasher to de gluten your cookware (I know crazy paranoia).

Anyway try getting a new crockpot or cooking foods in one with a disposable liner in it. Being winter soups do not sound bad right now. Doing this with a new dedicated cookware and disposable bowls you can be extra vigilant and see if you go back in a few weeks if your numbers are going down any. This way you can see about ruling out refractory celiac. I mean hey Christmas is coming up might as well gift yourself some new cookware.

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2 hours ago, cristiana said:

Hello Friends

You have a very shellshocked celiac posting this message this morning and I could do with some encouragement.

Anyone who knows me will tell you I am a crashing bore when it comes to avoiding gluten.   I hardly ever eat out; I take my own food, and read this forum almost every day.

I had gastritis (not DX'd by endoscopy) earlier this summer and am finally off the ranitidine.  All the time it felt rather familiar to the time I was diagnosed with celiac disease but the doctors went with gastritis.  The pain under the sternum is almost gone now, unless I drink something a bit acid or fizzy, I no longer have heartburn - the only thing I do have is pain under my left ribs, where apparently my stomach is.

However, in the run up to this gastritis I was taking Floradix and I think I was inadvertedly consuming the one with gluten in it.  I had to stop taking it in the summer as even the smallest amount of iron supplement was hurting my stomach.  (Thinking about it it must have been the gluten, not the iron!)

Then it was October and a big birthday and my sister picked a lovely place to eat for my birthday, and we also ate in the hotel restaurant.  I ate one pasta dish which they assured me was gluten-free but it tasted suspiciously nice!  Another time I was offered egg and salmon - but it came with normal bread.  Thankfully I didn't eat the bread.  But I don't think these guys had a clue.  Normally I'd have caused a fuss but I it was my special birthday and everyone had gone to so much trouble.

Then my appointment came with a new consultant a couple of weeks later who asked why my other consultant who normally deals with me had not tested my TTG in the past five years.  I said, I haven't a clue - I wish he had.  My original consultant had continued to test all liver function etc though and all of these are now normal.  

So, anyway, this new consultant gave me the test and guess what.  It came back today in the late 80s. 

When I was diagnosed it was stratospheric - over 100 - so I suppose at least it has come down a bit - but this is of very little comfort to me.  The HA in my  is saying I must have some other disease (I hardly dare google) - or refractory celiac.  Again, don't want to google.

I wonder if the trip away and the iron supplement could have done this?

The only thing I can think is that when I was first diagnosed  I used to only eat things that said Gluten Free on the labels, that were authorised by the Coeliac Society, or whole foods.  More recently I've been trusting the new food labelling laws here which say gluten must be declared.   If I don't see gluten in the ingredients, I don't mind eating it.  That could be a big mistake I guess.

I do also sometimes bake things in an oven uncovered that sometimes has glutenous products in it.  Also I share a dishwasher with gluten consumers, and sometimes the dishes do feel like they aren't entirely clean.

The thing that is making me feel so sad is I always thought I took far fewer risks than some of my celiac friends and they've been tested for TTG and they are fine.

Booo  hoooo......  Please help someone - I don't know what to do.

 

 

 

cristina,

**** this is not medical advice let me say on the front end but it make sense to me. . . but it might not to you.

you have another protein in your diet you are reacting too! and haven't identified it yet.

jmg seems to be reacting to casein right now.

most/many gluten free things use corn as a common flour replacement.  though pea protein and rice are also common.

This would be easy to determine.

go on an allergy elimination diet switching any gluten free foods to a rice based noodle or empashize asian cuisine in your diet.

until my sugar became a problem I regullary at mei fun (rice noodles) but they tend to turn to sugar too quickly for me now.

But I know because I test my sugars regularly. 

You won't know if you don't test.

Give yourself a month off of all corn products and see if you don't feel better it might be the answer  you are looking for.

It is not uncommon I developed pellagra with my celiac disease.

I know Ennis_tx has a problem with corn too.

see my blog post about my pellagra and celiac journey on celiac.com

here is a great thread on celiac.com about it explained well by the user "skylark" where she summarizes it well.

I will quote skylark from the thread.

"The reaction is NOT a cross-reaction to corn. Let me repeat that lest there is any confusion. THIS IS NOT A CROSS-REACTION TO CORN. It is a completely separate set of anti-zein antibodies in some teens and adults with celiac disease. Interestingly, two of the five corn-sensitive people were still sick gluten-free. They don't mention in the paper if they got well off corn.

First, if you're feeling OK, don't freak out about corn. Corn is still safe for most celiacs. Only 5 out of 24 people they tested had the antibodies. Also, the corn antibodies don't tend to show up in kids suggesting that corn is not inflammatory like wheat. There is no evidence for corn causing celiac in someone who grows up without wheat. The authors suggest that a person needs to be untreated celiac for a while for the corn antibodies to show up."

I only mention it still because you are still suffering from something. . .?  maybe it is dairy like jmg or maybe it corn and you haven't though to test this theory.

A 30 day elimination could provide great inside if you are one of the 20 percent (a subset of celiac's) who also react to corn in their diet.

it is eerily similar (almost exactly) the same amount (20 percent) of children who do not respond to a gluten free diet.

see this article by beyondceliac entitled "One in Five Children Not Healing on the Gluten-Free Diet"

https://www.beyondceliac.org/research-news/View-Research-News/1394/pageindex--1/postid--63311/

it could still be cross contamination but you have been very diligent but I bet you haven't thought about other allergen's in your diet . . . like corn because there is not much awareness on this topic.

the gluten free society website is the one I have seen that has highlited the role corn could/might play in celiac's who are still not responding well on a gluten free diet alone.

here is their page on corn and how in approx. 50% of celiac's corn is also a problem.

https://www.glutenfreesociety.org/corn-antibodies-in-celiac-crohns-and-ulcerative-colitis/

I chose their page because it has a nice chart to visually illustrate it.

here is the original research  https://www.ncbi.nlm.nih.gov/pubmed/371884

you will note it is very old but the skylark research/thread "interesting new research on corn"  was from 2012.

here is the link to the research.

https://link.springer.com/article/10.1007%2Fs11130-012-0274-4

I only know corn was a problem for me.

I hope this is helpful.  Why NONE of us want to eliminate another protein/allergen/food from our diet it would be helpful to at least know to look for this allergen (zein) in your diet.

You can't do what you don't know.  It is easy enough to do.  Just not as easy as we would like.

When I first found out about my celiac disease.  I said GREAT tell me what to avoid and I can do it.

As trents said in another thread

"Your narrative is not an uncommon one. Many report that after going gluten free they still show inflammatory disease markers in followup testing. I wish it were the case that going gluten free is the magic bullet that we all have expected it to be at the outset of the Celiac journey. As more evidence mounts over the years from medical science studying this disease it turns out it is more complex than was first thought. Gluten may not be the only trigger of inflammation for a lot of Celicacs. And there is something called refractory Celiac disease (unresponsive to a gluten free diet, no reversal). Sorry, I don't mean to discourage you. And certainly, don't give up gluten free eating. I think there is still so much medical science doesn't know about these kind of autoimmune conditions. In the mean time, do the best you can and enjoy life. Each day is a gift. Having a condition like this can take over your life if you let it. Don't. "

Don't be discouraged if it is corn you are reacting too you can do something for/about it.  Corn is tied to an old forgotten disease today called Pellagra.  Much like scurvy or beri beri it is lost to  the  history book . . . but sometimes still show's up in unexpected places like in celiac's.

the international journal of celiac disease noted this association of celaic's developing pellagra in 2015

http://pubs.sciepub.com/ijcd/3/1/6/

quoting concerning

3. Pellagra and celiac disease

"The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]."

but medical science is often slow to recognize these connections.

17 years is the typical time for clinical application of new medical research.

see my blog post about the devastating delay of putting this knowledge into clinical practice.

it is nobody's fault really.  if something is new or different. It takes a while to confirm this information.

the motto is first "do no harm" for a reason right?

discussed well here at harvard health

https://www.health.harvard.edu/blog/first-do-no-harm-201510138421

quoting from the article

"Is “first, do no harm” even possible?

The idea that doctors should, as a starting point, not harm their patients is an appealing one. But doesn’t that set the bar rather low? Of course no physician should set out to do something that will only be accompanied by predictable and preventable harm. We don’t need an ancient ancestor, however well-respected, or an oath to convince us of that!

But if physicians took “first, do no harm” literally, no one would have surgery, even if it was lifesaving. We might stop ordering mammograms, because they could lead to a biopsy for a non-cancerous lump. In fact, we might not even request blood tests — the pain, bruising, or bleeding required to draw blood are clearly avoidable harms."

and why we have two camps essentially (I am speaking in simple terms here for an easy example/analogy)

the supplementors like Ennis_tx and I and the non-supplementors (first, do no harm)

and why We LOVE magnesium with good reason (ennis_tx and I).  It really, really, really, works.

but the non-supplementing camp has to be convinced, really convinced that it can help them.

And often Ennis_tx and I loose that battle for a number of reasons.

Mainly because there are so many, so man forms of Magnesium it is extremely hard to find a "good" bioavailable form with minimal downside risk like Magnesium "flushing" that can be common in higher doses of Magnesium.

so as expert/experienced supplemetors we pass own our knowledge of Magnesium Glycinate or Magnesium Citrate in divided doses (ie. with each meal) that helps us with our fatigue, energy, cramps, and sleep problems etc.

but the flushing effect of magnesium follows the motto/adage "do no harm" and many will not take it . . . though it does "TONS" more good than it every could do harm.

so it is hard to win the fight if you aren't willing to risk something in return. ie. supplementing with the missing ingredient (whatever that is).

truth is . . . we might not know at the time what is is or ever.

but for pellagra we have figured that out . . . it is Niacinamide.

see my blog post about where supplementing helped me.

I hope it helps you too cristina.

****this is not medical advise just something I did that helped me and if you are still suffering maybe you will want to try it for yourself.

water soluble B-vitamins are extremely safe.  they should be taking with each meal or 2/day if that is not possible for 3 months for best results.

like magnesium . . . niacinamide is used in the krebs cycle (photosynthesis for the animal)  to help us make energy and when we get low we run down.

You have heard stress kills us right?  Well it maims us first!

without enough B-vitamins we have issues with stress because we can't make energy to flee in times of stress.  Fight or flight right. 

see how b-vitamins helps those with celiac disease by reading this article on celiac.com

https://www.celiac.com/articles/21783/1/B-Vitamins-Beneficial-for-Celiacs-on-Gluten-Free-Diet/Page1.html

and from pellagra if corn is also causing you a problem that can be tested by removing corn from your diet for 30 days and reintroducing it much like you did gluten when you got your celiac diagnosis.

sorry this is so long but there is so much ground to cover . . it is hard to do in in one post/reply and why I have tried to write by posteboy blog posts to help those still looking for answers who are still struggling with control on a gluten free diet and have not considered corn in their diet.

It only takes one to make a difference.  One starfish at a time.

http://www.starrbrite.com/starfish.html

The Starfish Story
Original Story by: Loren Eisley

 

One day a man was walking along the beach when he noticed
a boy picking something up and gently throwing it into the ocean. 

Approaching the boy, he asked, �What are you doing?�

The youth replied, �Throwing starfish back into the ocean. 
The surf is up and the tide is going out.  If I don�t throw them back, they�ll die.�

�Son,� the man said, �don�t you realize there are miles and miles of beach and hundreds of starfish? 
You can�t make a
difference!�

After listening politely, the boy bent down, picked up another starfish,
and threw it back into the surf.  Then, smiling at the
man, he said��
I made a difference for that one.�

I hope this is helpful as always

“Consider what I say; and the Lord give thee understanding in all things” this included 2 Timothy 2: 7

Remember **** This is not medical advice only my personal experience yours might be different but it helped me.  If it helps then you too then praise bee to God!

2 Corinthians (KJV) 1:3,4 3) “Blessed be God, even the Father of our Lord Jesus Christ, the Father of mercies, and the God of all comfort;

4) who comforteth us in all our tribulation, that we may be able to comfort them which are in any trouble (starfish/sufferer), by the comfort wherewith we ourselves

are comforted of God.”

posterboy by the Grace of God,

 

 

 

 

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Poster boy - thank you SO much for this post.  You concluded with a quote from the KJB which I read only last night - before I knew any of this.  You have encouraged me greatly.  I'm going to read it later when the house is quiet but that is so interesting that an elevated TTG can be indicative of a problem with another protein.  

Thank you so much again, I don't feel so alone now.  

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Cristiana,

What you should be shocked about is that you have not received follow-up care for your celiac disease.  You should be tested annually as recommended by both American and British GI Associations and all the world celiac centers.  Like this one:

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

I know nothing about the NHS, but I would figure out how to issue a complaint about your last doctor.  

Your elevated TTG sounds like you have been exposed to gluten.  You mentioned restaurants, uncertified gluten free foods, shared cooking areas —taking more risks.  Look to those to determine a gluten source.  And yes, like Poster Boy and Ennis have pointed out, along the way you could have developed some additional intolerances (e.g. corn or casein) or have become even more sensitive to gluten.  I have not read that the TTG can be elevated due to another protein beyond gluten.  Slightly increased TTG  can be attributed to other illnesses, but your result is high, so I would bet on gluten as the culprit.  I could be very wrong or that the science has not caught up yet, but I would think that gluten is still getting into your diet.  

http://www.cureceliacdisease.org/faq/after-going-gluten-free-can-a-positive-ttg-mean-anything-other-than-gluten-present-in-my-diet/

 

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Thank you cycling lady! 

On the positive, there is room for improvement.  I would be even more upset if I'd been on a whole food diet all this time in an exclusively gluten free kitchen.  It also occurs to me I've been wearing more lipstick recently and I haven't a clue if this could also set things off.  

I guess too that I could be one of those supersenstive coeliacs, which I have always wondered about as people around me take risks that I'd never take.  

I'm very concerned about the doctor's follow up and have just emailed a friend to tell her she must be followed up too - she lived locally and hasn't had that test since diagnosis either.   

On a purely practical level, tell me, how do you bake cakes and pies etc in a shared oven?  Do you cover them up?

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I think it depends on how dirty the oven might be.  My house is gluten free.  Personally, I would never bake in a shared oven (thinking family lake house) but do in my mother’s oven which is super clean and she usually runs it though a cleaning cycle before we arrive.    Perhaps others can address that issue.  

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I'm so sorry to hear that!  (((Hugs)))

I do wonder if gluten has been causing the symptoms of what your Dr believed was gastritis.   

I think either a whole foods diet or whole foods plus certified gluten free for a time would be good.  Maybe 6 months and then retest.  

In my house we only cook gluten free.  I do let my kids have crackers and snacks that have gluten, but they are in their own area and everything has to be cleaned up after.  I tried doing a shared kitchen after I was diagnosed, but it was too hard.  I do all the cooking and decided that we would just cook gluten free things.  My family fully supported me and brag about how my gluten free stuff is better than gluten stuff. 😀

Maybe it's time to make your home gluten free?

Just a thought...big ((((hugs))))

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We cook everything in the same oven. Never an issue for me for 10 years. It's not like a microwave where stuff explodes onto the ceiling and could fall onto the food.

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What a lovely group of friends you all are.

Thank you!

I was devastated at this news yesterday as for nearly five years I've been living under the delusion that all was well. Several of you on this website have mentioned the annual TTG test but I trusted my consultant implicitly, and thought that testing was just the American system. Alarm bells rang a bit when some acquaintances from over the county border in Hampshire said they had an annual coeliac blood test - the TTG - whereas my doc was just checking my liver function, full blood count, and iron - although I don't doubt he had good reason to do those as my Liver Function Tests were off when I was first diagosed. Thankfully those seem to be perfect now but I want to get the TTG down.

I'm going to take your advice on board and will try my hardest.    It seems that dealing with the gluten CC is first priority.  I have some savings and my husband and I are going to spend money on getting the kitchen gluten free (apart from a cookie/bread corner for them - nice idea, Icey!).  But from now on they are going to rinse everything before it goes in the dishwasher and we are not going to cook anything with gluten in our pans/crockpots etc.  

Eating out is a thing of the past, at least for now.  I think there are lots of restaurants in this country that really train their staff well in all of this, but this year I've eaten in places where they are clearly making some terrible mistakes.  Crumbs in salad (chopped on a glutenous board); sliced real bread put on the same plate as 'gluten free' eggs and salmon; pasta that tasted suspiciously like pasta I used to eat, cakes advertised as gluten free, but baked in house.  I can't take these risks any more. 

What is gutting (pun) is I don't know how long this has been going on.  So please, any UK Coeliacs reading this make sure you are being looked after properly.  I don't know if this elevated TTG is just this year, where I have been more relaxed and have made more mistakes, or whether it has never come down.  All I can do now is my best to try to change things. 

This great piece of advice from Trents on another thread says it all really.

 

 

Bigchan, welcome to the forum!

Your narrative is not an uncommon one. Many report that after going gluten free they still show inflammatory disease markers in followup testing. I wish it were the case that going gluten free is the magic bullet that we all have expected it to be at the outset of the Celiac journey. As more evidence mounts over the years from medical science studying this disease it turns out it is more complex than was first thought. Gluten may not be the only trigger of inflammation for a lot of Celicacs. And there is something called refractory Celiac disease (unresponsive to a gluten free diet, no reversal). Sorry, I don't mean to discourage you. And certainly, don't give up gluten free eating. I think there is still so much medical science doesn't know about these kind of autoimmune conditions. In the mean time, do the best you can and enjoy life. Each day is a gift. Having a condition like this can take over your life if you let it. Don't.

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    Spread beef with mayonnaise hot sauce mixture as desired.
    Place a bit of grilled corn kernels, avocado, tomato and red onion in a 3-inch strip along one edge of each tortilla. 
    Fold ends and roll into a burrito shape, and serve. I like to add sweet, crunchy pea greens for some extra crunch and nutrition.

    Christina Kantzavelos
    Celiac.com 07/20/2018 - During my Vipassana retreat, I wasn’t left with much to eat during breakfast, at least in terms of gluten free options. Even with gluten free bread, the toasters weren’t separated to prevent cross contamination. All of my other options were full of sugar (cereals, fruits), which I try to avoid, especially for breakfast. I had to come up with something that did not have sugar, was tasty, salty, and gave me some form of protein. After about four days of mixing and matching, I was finally able to come up with the strangest concoction, that may not look the prettiest, but sure tastes delicious. Actually, if you squint your eyes just enough, it tastes like buttery popcorn. I now can’t stop eating it as a snack at home, and would like to share it with others who are looking for a yummy nutritious snack. 
    Ingredients:
    4 Rice cakes ⅓ cup of Olive oil  Mineral salt ½ cup Nutritional Yeast ⅓ cup of Sunflower Seeds  Intriguing list, right?...
    Directions (1.5 Servings):
    Crunch up the rice into small bite size pieces.  Throw a liberal amount of nutritional yeast onto the pieces, until you see more yellow than white.  Add salt to taste. For my POTS brothers and sisters, throw it on (we need an excess amount of salt to maintain a healthy BP).  Add olive oil  Liberally sprinkle sunflower seeds. This is what adds the protein and crunch, so the more, the tastier.  Buen Provecho, y Buen Camino! 

    Jefferson Adams
    Celiac.com 07/19/2018 - Maintaining a gluten-free diet can be an on-going challenge, especially when you factor in all the hidden or obscure gluten that can trip you up. In many cases, foods that are naturally gluten-free end up contain added gluten. Sometimes this can slip by us, and that when the suffering begins. To avoid suffering needlessly, be sure to keep a sharp eye on labels, and beware of added or hidden gluten, even in food labeled gluten-free.  Use Celiac.com's SAFE Gluten-Free Food List and UNSAFE Gluten-free Food List as a guide.
    Also, beware of these common mistakes that can ruin your gluten-free diet. Watch out for:
    Watch out for naturally gluten-free foods like rice and soy, that use gluten-based ingredients in processing. For example, many rice and soy beverages are made using barley enzymes, which can cause immune reactions in people with celiac disease. Be careful of bad advice from food store employees, who may be misinformed themselves. For example, many folks mistakenly believe that wheat-based grains like spelt or kamut are safe for celiacs. Be careful when taking advice. Beware of cross-contamination between food store bins selling raw flours and grains, often via the food scoops. Be careful to avoid wheat-bread crumbs in butter, jams, toaster, counter surface, etc. Watch out for hidden gluten in prescription drugs. Ask your pharmacist for help about anything you’re not sure about, or suspect might contain unwanted gluten. Watch out for hidden gluten in lotions, conditioners, shampoos, deodorants, creams and cosmetics, (primarily for those with dermatitis herpetaformis). Be mindful of stamps, envelopes or other gummed labels, as these can often contain wheat paste. Use a sponge to moisten such surfaces. Be careful about hidden gluten in toothpaste and mouthwash. Be careful about common cereal ingredients, such as malt flavoring, or other non-gluten-free ingredient. Be extra careful when considering packaged mixes and sauces, including soy sauce, fish sauce, catsup, mustard, mayonnaise, etc., as many of these can contain wheat or wheat by-product in their manufacture. Be especially careful about gravy mixes, packets & canned soups. Even some brands of rice paper can contain gluten, so be careful. Lastly, watch out for foods like ice cream and yogurt, which are often gluten-free, but can also often contain added ingredients that can make them unsuitable for anyone on a gluten-free diet. Eating Out? If you eat out, consider that many restaurants use a shared grill or shared cooking oil for regular and gluten-free foods, so be careful. Also, watch for flour in otherwise gluten-free spices, as per above. Ask questions, and stay vigilant.

    Jefferson Adams
    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

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    • Thank you! Indeed it does help. I read something yesterday also about carrots being a grand idea for recovery, I suppose this goes together. I get a lot of sunlight and I eat plenty of eggs, so that should be good for vitamin D until I can find a decent supplement or some of this cod liver oil. I'll up the carrot intake I suppose too. Right now though honestly, I am taking B12, drinking coconut water, and eating yogurt exclusively. Before that I was mostly eating bland things like rice and eggs, but that got me constipated, so definitely nevermind that for awhile... fixed it as soon as I quit and went for softer foods and a near liquid diet. I'm realizing now from a few screwups and recoveries, this being the worst so far... that what the OP said is very true. Not only that, it may be refreshing to realize that the whole "darkest hour is before the dawn" thing seems to be true of this recovery. I keep getting worse and worse and worse and then I'll have a few hours of amazing respite. So I feel like it happens in cycles and maybe the last purge of gluten is when your body is really freaking out. Let's just get through this already!
    • I am so glad you appealed! Persistence pays off! Yay you!
    • We appealed. First appeal was denied since "no diagnosis" was stated. What we told Medicare was since they had all the claims, they had all the DX and info so just look it up.  Wrong!  The appeal goes to a Medicare contractor who doesn't give a flip about you--you have to "spoon feed" them all the info that Medicare ALREADY HAS so they can process.  We were referred to a 2nd appeal status.  I did some internet research and found the document they mentioned as the basis of the denial.  In one paragraph of that guidance document it specifically states that CELIAC DX makes these blood test reimburseable. So at this 2nd stage of appeal I sent a copy of this document underlining the paragraphs relating to celiac and a copy of my Doc's DX of celiac.  Just got notice that we WON!  Medicare will pay for the following procedures with a celiac diagnosis: 82746: Blood Folic Acid Serum 82607: Vitamin B-12 Your lab may tell you these tests are NOT COVERED by Medicare and make you pay up front.  They may cite Local Coverage Determination (LCD) #L34914 (do a search for that document)  Under the caption "Group 3 Codes" of L34914 it stated that ICD-10 code K90.0 Celiac Disease is a COVERED DX for CPT codes 82607 and 82746. Don't accept a denial -- appeal it but document as I stated above.    
    • I get 1500 Io of vitamin d a day. That should be enough.  Plus I eat stuff with vitamin d already so I don't know what the problem is. Maybe just the cold. I feel like the vertigo is getting better but not sure.  Bppv maneuvers have not done anything. 
    • Maybe if you join one of those groups you found and post that you want to have lunch with people they will respond? https://www.facebook.com/groups/320392650815/about/ You could also try to send a PM to the author of this thread. https://www.celiac.com/forums/topic/30345-columbus-ohio-monthly-meeting/ I'm a member of a small FB group in Athens and I am sure if I asked them someone would want to meet for food. https://www.google.com/search?client=firefox-b-1&ei=ONhUW5PwAqHdjwTN1bagCw&q=gluten+free+meetup+columbus+ohio&oq=gluten+free+meetup+columbus+ohio&gs_l=psy-ab.3...115663.122147.0.123329.9.9.0.0.0.0.274.1603.0j4j4.8.0....0...1c.1.64.psy-ab..1.0.0....0.46BWdQCsxPo    
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