Shocked - elevated TTG

[cristiana]

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.

 

 

 

[Ennis-TX]

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.

[Posterboy]

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"

Open Original Shared Link

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.

Open Original Shared Link

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

here is the original research  Open Original Shared Link

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.

Open Original Shared Link

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

Open Original Shared Link

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 ^{[Open Original Shared Link, Open Original Shared Link]}. Alternatively, Pellagra was described in celiac disease ^{[Open Original Shared Link]}. 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 ^{[Open Original Shared Link, Open Original Shared Link]}."

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

Open Original Shared Link

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.

Open Original Shared Link

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,

 

 

 

 

[cristiana]

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.  

[cyclinglady]

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:

Open Original Shared Link

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.  

Open Original Shared Link

 

[cristiana]

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?

[cyclinglady]

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.  

[icelandgirl]

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))))

[Victoria1234]

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.

[cristiana]

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.