Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Help With Results...ttg & Thyroid
0

21 posts in this topic

Hello again

Received some tTG results today from doctors. They could not interpret them. So I was wondering if anyone here could. I have been gluten-free for 8 months and I have no idea what my previous tTG levels were as they only came back with a positive (UK protocol in some areas). So I have no idea if these levels are good or not.

 

(I have also put on some thyroid levels that were done for me at the same time, as I have been having some hair loss, palpitations, racing heart and a few other bits.)

 

ANY info GREATLY appreciated, especially with regards to my antibody levels... This is my first one... Here goes (I'd close my eyes if I didn't have to type!!)

 

Word for word:

 

Anti-tissue transglutaminase level  -   1.2u/mL (0-10) Tissue transglutaminase equivocal range =7-10u/mL

 

 

Someone give me some good news... Am crossing everything.

 

And  if anyone could explain to me exactly what this test is and what it tests for, I think its the antibodies produced to gluten, but is there any more to it ?? (Sorry to be so naive)

 

I know my thyroid is within lab range but wondered if perhaps I might tend towards being hypothyroid and whether these results lean towards it or not.

 

Thyroid function test

Serum free T4  17pmol/L (10-22)

Serum TSH 2.7 miu/L   (0.3-55)

 

Many HUGE thanks again to everyone

0

Share this post


Link to post
Share on other sites


Ads by Google:

Maybe I am missing something here but your tTg looks pretty good to me.  Am I reading it correctly that it is 1.2, with a normal range of 10 and under?  I am not sure what the equivocal range means.

 

tTg tests for intestinal damage only.  The DGP test looks for reaction to gluten in the bloodstream and is the better test to do for dietary compliance, yet many doctors never check both numbers. tTg can be elevated from other autoimmune diseases so having a slightly elevated number after diagnosis and start of the gluten-free diet may not be abnormal, if you have or suspect other AI problems.  Is there any way that they have a tTg number from before somewhere in your chart?  One other thing.....do not become alarmed if your tTG never hits zero.  It's not supposed to and rarely occurs in anyone.  You just want the tTg results to be in the low range of normal, but the lower the number is, the better you are doing.  I have gotten mine to a 1 but never a zero......it would be nice but not expected.

 

As for your thyroid, the numbers don't look too bad but in the States, many progressive doctors will state that a TSH of over 2.5 is treatable thyroid disease.  The problem is, TSH can be different for many and should not be used as a diagnostic test alone.  T3 and T4 levels have to taken into account, along with any symptoms you may be having.  It would have been really helpful if the doctor had done thyroid antibody numbers and yet....many never do.  <_<   What's odd is that you have heart palps and a feeling of a racing heart, which can be hyperthyroid symptoms.  Sometimes those with Hashi's thyroid disease, the autoimmune one, can swing between hyper and hypo.  I have Hashi's and that has happened to me....very unpleasant.

 

I hope this helps and if you have any more questions, ask away!

0

Share this post


Link to post
Share on other sites

Maybe I am missing something here but your tTg looks pretty good to me.  Am I reading it correctly that it is 1.2, with a normal range of 10 and under?  I am not sure what the equivocal range means.

 

tTg tests for intestinal damage only.  The DGP test looks for reaction to gluten in the bloodstream and is the better test to do for dietary compliance, yet many doctors never check both numbers. tTg can be elevated from other autoimmune diseases so having a slightly elevated number after diagnosis and start of the gluten-free diet may not be abnormal, if you have or suspect other AI problems.  Is there any way that they have a tTg number from before somewhere in your chart?  One other thing.....do not become alarmed if your tTG never hits zero.  It's not supposed to and rarely occurs in anyone.  You just want the tTg results to be in the low range of normal, but the lower the number is, the better you are doing.  I have gotten mine to a 1 but never a zero......it would be nice but not expected.

 

As for your thyroid, the numbers don't look too bad but in the States, many progressive doctors will state that a TSH of over 2.5 is treatable thyroid disease.  The problem is, TSH can be different for many and should not be used as a diagnostic test alone.  T3 and T4 levels have to taken into account, along with any symptoms you may be having.  It would have been really helpful if the doctor had done thyroid antibody numbers and yet....many never do.  <_<   What's odd is that you have heart palps and a feeling of a racing heart, which can be hyperthyroid symptoms.  Sometimes those with Hashi's thyroid disease, the autoimmune one, can swing between hyper and hypo.  I have Hashi's and that has happened to me....very unpleasant.

 

I hope this helps and if you have any more questions, ask away!

you shining star!! thank you!

so...tTG, maybe you are right then... i thought the same as you initially... and then starting looking at the results again, and wondered why they say Anti-tissue transglutaminase and then Tissue transglutaminase. Are these things the same thing then??

 

Ugh. I then looked up what the equivocal range meant and thought perhaps it meant I was 7-10u/mL. Which is high.

Now I am wondering if it has been put there for a range reference???

 

Equivocal means 'open to more than one interpretation', so I think it would indicate a level where they couldn't quite say 'positive', instead perhaps weak positive! I only ever had a tTG done once before by a different gastro, so there's no way it could be from before. 

 

My God. If it I am 1.2u/mL in a ref range of 0-10, I'll be learning how to cart wheel across my kitchen table!!!

 

As for thyroid, that's what I thought. My doctors point blank refuses to test my thyroid anymore, she wont entertain the idea of testing antibodies or anything UNLESS i'm out of their lovely huge ranges!! 

 

Hashimotos?? I didnt realise that that Hashimotos went between the two... Interesting... What other symptoms are there? 

 

Thanks Gemini for your answer, REALLY appreciated... Between you and Lisa (GottaSki), you've cheered me up, and brightened my doom! I am now hoping that you two are seeing the report as it ought to be seen and not through the eyes of an optimist turned pessimist! Celiac disease does strange things to your personality and confidence hey?

Hugs from blighty and thanks

0

Share this post


Link to post
Share on other sites

Well....I have to like someone who sends hugs from Blighty, don't I?  ;)   I have Irish blood in my veins so thank you for the hugs!

 

Actually, I am a Lisa also so you will always get the most up to date and accurate Celiac information from a Lisa.  :P

 

I still say that your Celiac tTg testing is normal and actually, pretty damn good.  Especially if you are asymptomatic and seeing improvement in that area.  tTg stands for tissue transglutaminase, as you probably already know.  Transglutaminase is a protein and the anti-tTg means autoantibodies against the tissue transglutaminase.  Say that 3 times fast!  :lol:

The testing is checking for the antibodies that result when you have a gluten problem.  That's the start of the destruction of your small intestine.

 

Hashimoto's is autoimmune thyroid disease. You can also have a thyroid problem that is not immune based.  Hashi's can swing between the two in times of stress or if your thyroid gets out of whack...which it can with Hashi's.  I went out of whack when I started to absorb nutrients again and all of a sudden, the dose I had been taking was too high.  I swung majorly high and then it took awhile to get the correct dose again.  I went too low trying to figure that all out and it all was a big pain in the butt.  But I am good now and am taking a lower dose of thyroid hormone.  Take a look at this website: http://www.stopthethyroidmadness.com/  It is chock full of useful information on thyroid disease...all the things your doctor does not want you to know.  People in the States have trouble finding good thyroid doctors because they do not treat thyroid well here....they try to do it cheaply and utilize only one test instead of doing a full thyroid panel.  You have to take the bull by the horns with regards to thyroid disease.  Educate yourself on it so if your troubles worsen, you'll be armed with information to throw at the doctor.

 

I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free.  You might find everything gets better the longer you stick with the diet.  Above all, it takes time to heal and feel better.  I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

0

Share this post


Link to post
Share on other sites

I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free.  You might find everything gets better the longer you stick with the diet.  Above all, it takes time to heal and feel better.  I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

 

I do believe Gemini said almost these exact same words to me about four years ago -- listen to her :)

0

Share this post


Link to post
Share on other sites




I love you both! :D seriously! Wish I could meet you wonderful people!

0

Share this post


Link to post
Share on other sites

Well....I have to like someone who sends hugs from Blighty, don't I? ;) I have Irish blood in my veins so thank you for the hugs!

Actually, I am a Lisa also so you will always get the most up to date and accurate Celiac information from a Lisa. :P

I still say that your Celiac tTg testing is normal and actually, pretty damn good. Especially if you are asymptomatic and seeing improvement in that area. tTg stands for tissue transglutaminase, as you probably already know. Transglutaminase is a protein and the anti-tTg means autoantibodies against the tissue transglutaminase. Say that 3 times fast! :lol:

The testing is checking for the antibodies that result when you have a gluten problem. That's the start of the destruction of your small intestine.

Hashimoto's is autoimmune thyroid disease. You can also have a thyroid problem that is not immune based. Hashi's can swing between the two in times of stress or if your thyroid gets out of whack...which it can with Hashi's. I went out of whack when I started to absorb nutrients again and all of a sudden, the dose I had been taking was too high. I swung majorly high and then it took awhile to get the correct dose again. I went too low trying to figure that all out and it all was a big pain in the butt. But I am good now and am taking a lower dose of thyroid hormone. Take a look at this website: http://www.stopthethyroidmadness.com/ It is chock full of useful information on thyroid disease...all the things your doctor does not want you to know. People in the States have trouble finding good thyroid doctors because they do not treat thyroid well here....they try to do it cheaply and utilize only one test instead of doing a full thyroid panel. You have to take the bull by the horns with regards to thyroid disease. Educate yourself on it so if your troubles worsen, you'll be armed with information to throw at the doctor.

I would see what happens with the gluten-free diet because that can do a lot with regards to calming the thyroid down. I still need thyroid hormone but it is a lot more stable since going gluten-free. You might find everything gets better the longer you stick with the diet. Above all, it takes time to heal and feel better. I read your signature and all the problems you list are common to Celiac Disease and can be improved upon or healed completely so do not be discouraged. Just be patient and try to keep a positive attitude. Yeah, I know, easier said than done!

You know... THANK YOU! And more hugs :D

What you say sits well with me, I do think my thyroid is out as I have put a lot a weight on (from fruit and veg??!) and my hair SO thin now, I have bouts of mass shedding. Also a pee test with a private doc a while ago showed adrenal fatigue... Guess that impacts thyroid? And most hormones really. So I must be patient as you say! I'm gonna arm myself with the info, so thank you for the link, will give it a good going over!!

So the tTG thingy, if I am 1.2 (7-10) being equivocal range, then that's great isn't it? Or at least normal (these days normal is great to me!!)

Technically I assume if I no longer produce antibodies, my body just needs to heal now? It's hard bloody work this celiac business hey!! It amazes me that the docs are so blasé about it, they don't have a clue. They tried to give me beta blockers as I have been having afib and palps,... I asked if there was gluten in the medicine... He answered " don't worry, if there is, it's only a small amount" !!!!!! I gasped incredulously! Covered my mouth and escaped! As you say, we have to arm ourselves! You need huge fat verbal weapons here in blighty!!

Gemini thank yooooooou, and GottaSki, thank yoooouuu toooooo :D

0

Share this post


Link to post
Share on other sites

You know I'm sure celiac disease gives you bipolar??!!! I swing from elation to depression so quickly! Normally all health related, but still! I'd like my stable self back now please! ;)

0

Share this post


Link to post
Share on other sites

 I'd like my stable self back now please! ;)

 

My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

1

Share this post


Link to post
Share on other sites

My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

Lol :D

I wish my 

husband knew what this celiac disease is like, he gets cross if I remind to watch this or watch that...and gets cross if i'm feeling crap! does NOT get it. hey ho! my 6 year old son responds much better and is far more caring about it!!! guess you can't have it all?!!

 

My stable self is making more appearances lately -- my hubs and sons are VERY thankful ;)

 

Hang tight - eat right -- things will get better!

1

Share this post


Link to post
Share on other sites

 

Lol :D

I wish my 

husband knew what this celiac disease is like, he gets cross if I remind to watch this or watch that...and gets cross if i'm feeling crap! does NOT get it. hey ho! my 6 year old son responds much better and is far more caring about it!!! guess you can't have it all?!!

 

 

Unfortunately it took me getting pretty damn sick before my hubs really got it -- and part of him did think I was faking flares for years -- he went through a pretty tough time when I was finally diagnosed and we learned more about what had been happening to me over the years -- I don't blame him -- there were times even I thought it must be all in my head -- after all that was the only thing left that it could be, right?  NOT.

0

Share this post


Link to post
Share on other sites

A-fib and palpitations can be tied to both Celiac and thyroid problems.  Many people with A-fib have reported that their problems decreased or went away with the gluten-free diet.  This is all tied to inflammation.  If you look at associated conditions, both A-fib and bipolar are listed.  I would not recommend talking any meds for your heart, unless your problem is life threatening, until you have given your body a chance to heal. Don't let the docs symptom treat you.  You will be amazed at how many of your symptoms start to ease and disappear with time on the gluten-free diet. Then you'll be angry at the doctors again for not figuring this out.  And yes, adrenal fatigue and thyroid issues go hand in hand...they work in a loop together.  This is explained on the thyroid link I gave you.

 

I went to Ireland in 2011 and will go back.  I'll let you know whenever I do and we can meet up and have a little tipple in a pub.  ;)

 

Your tTg is great, from what I see, so keep up the good work!

0

Share this post


Link to post
Share on other sites

Unfortunately it took me getting pretty damn sick before my hubs really got it -- and part of him did think I was faking flares for years -- he went through a pretty tough time when I was finally diagnosed and we learned more about what had been happening to me over the years -- I don't blame him -- there were times even I thought it must be all in my head -- after all that was the only thing left that it could be, right?  NOT.

Yeah, I know, I mustn't be too hard on him I guess. It's just that I am expected to be 'normal' every day... Everything since going gluten-free, like my hives to eggs, my hair falling out, aches and pains, a-fib and palps, i get the standard "stop worrying about it, you're fine" or "stop reading up on the google, you see these things and them assign them to yourself". 

 

Like you say, it MUST all be in my head!! Its so upsetting though sometimes to have no support. Ho hum. Guess I'll just be strong enough for ME!

0

Share this post


Link to post
Share on other sites

A-fib and palpitations can be tied to both Celiac and thyroid problems.  Many people with A-fib have reported that their problems decreased or went away with the gluten-free diet.  This is all tied to inflammation.  If you look at associated conditions, both A-fib and bipolar are listed.  I would not recommend talking any meds for your heart, unless your problem is life threatening, until you have given your body a chance to heal. Don't let the docs symptom treat you.  You will be amazed at how many of your symptoms start to ease and disappear with time on the gluten-free diet. Then you'll be angry at the doctors again for not figuring this out.  And yes, adrenal fatigue and thyroid issues go hand in hand...they work in a loop together.  This is explained on the thyroid link I gave you.

 

I went to Ireland in 2011 and will go back.  I'll let you know whenever I do and we can meet up and have a little tipple in a pub.  ;)

 

Your tTg is great, from what I see, so keep up the good work!

THANK YOU :D

My doc gave me betablockers... 3 days ago... I have not taken them. I HATE the ida of masking things...and actually think you are right tbh, at least I hope you are!!

 

I have noticed (funnily enough), that my ONE treat... choc dipped rice cakes (dark choc), defo set me off with the palpatations... I havent had any of them in 2-3 days... I have only had minimal palpations, infact today I have yet to have one?

 

So it looks as though it could be the caffeine??? Never thought that such a small amount of choc in one day could do that?? I was probably totally 24g of dark choc! Hardly anything (at least by my standards!!!!) Looks as though I have lost my one treat, so bit upset, AND happy because hopefully its nothing more serious. (see I AM bipolar!!)

 

I'm just about to check your link out  now, haven't had the chance yet! Yes, about being angry at docs, they really have not been of any use to me whatsoever except to get the occasional blood test done (had to fight for them though), I have spend months being so angry and disappointed...now I have kind of had to 'let them go' for my own sake, and I have decided to charge of my own health as much as possible! You guys on this forum have been the 'mutts nuts'!!! As we say! I really cannot commend your support on here, it has been invaluable. 

 

I would just LOVE to meet up for a tipple, OMG how wonderful would that be? Seriously. You just let me know! And, of course, last but not least, thank you again. And more hugs :)

0

Share this post


Link to post
Share on other sites

Just a thought... If I look to be hypothyroid (think I am slightly) should I wait for a few months to see if things settle? I know that my results have fluctuated in the last 8 months quite alot. I'd obviously like to wait a while, unless I am putting myself at risk??

0

Share this post


Link to post
Share on other sites

If you feel really out of whack, you'll have to do something about that.  Although you mentioned that the docs weren't too willing to test your thyroid.  Keep on with the diet and keep track of your symptoms and if things aren't settling down where you feel comfortable, then you have to go to see them.  I hate that myself but don't ignore any serious symptoms.

 

Yes, chocolate could set off palps.  If I ate a piece of dark chocolate cake....even a small piece, it wires me out. It doesn't mean you can't have it forever, just give your heart a chance to settle down on the diet and try again in a little while.  Really.....you will be surprised at how many problems/symptoms are Celiac related, once they start to go away after a while on the diet.  I had many symptoms that disappeared over time.  Just remember, that might take a couple of years to happen. Healing does not happen overnight.  You have a lot of deficiencies and they need time to correct.

 

My cousin has A-fib really bad.  She was also told she has IBS and she has a thyroid problem.  I think she has Celiac also but they don't really listen to me.

She is not convinced she has Celiac so is just eating gluten light....dummy.  She ended up having surgery to correct the A-fib but if she doesn't wake up and go gluten-free, I doubt this will be a permanent fix.  I have tried telling her about the connection of Celiac to A-fib but it's like talking to a brick.  I have spoken with other Celiacs who told me their A-fib problems went away on the diet.  Your heart can start to produce tTg antibodies, which throw off heart function. Celiac affects every organ yet most doctors have no clue. 

 

I would look forward to having a drink with you!  I loved Ireland and the Irish.......such nice, friendly people. I do plan on returning so I will keep you in mind. By then, you should be healed and we'll have something to celebrate!   :)

1

Share this post


Link to post
Share on other sites

I would look forward to having a drink with you!  I loved Ireland and the Irish.......such nice, friendly people. I do plan on returning so I will keep you in mind. By then, you should be healed and we'll have something to celebrate!   :)

 

Hey...miss a couple days and miss important intel!

 

Drinks in Ireland with Gem and DS....can I tag along????

 

On a serious note...I did read the thread and strongly second Gemini....you know your body better than any doctor.  Keep a symptom log....anything serious...go to the doctor...they chased me away far too many times...never again.  I know better and so do you.  Hang tough!

0

Share this post


Link to post
Share on other sites

Anyone that wants to come along is welcome!  Ireland is gluten-free friendly and it's a beautiful country.  I'll never forget the first morning there...all jet-lagged and I heard these words at breakfast....."Would you like some Celiac bread with your eggs"?  That's what they call it.  Really....you have bread for me?  I knew then I would love Ireland.  The bread was good too!   :)

 

We really need to do a group Celiac trip......go invade some small country and whoop it up!

0

Share this post


Link to post
Share on other sites

count me in, maybe I can dig up a relative or 2 while there, lol.

0

Share this post


Link to post
Share on other sites

Anyone that wants to come along is welcome!  Ireland is gluten-free friendly and it's a beautiful country.  I'll never forget the first morning there...all jet-lagged and I heard these words at breakfast....."Would you like some Celiac bread with your eggs"?  That's what they call it.  Really....you have bread for me?  I knew then I would love Ireland.  The bread was good too!   :)

 

We really need to do a group Celiac trip......go invade some small country and whoop it up!

 

Whoop!  Whoop!  Whoop!

0

Share this post


Link to post
Share on other sites

Ha,ha,ha,ha!!!!!!!  I like the attitude!   :D  :lol:

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,640
    • Total Posts
      921,547
  • Topics

  • Posts

    • You should never have cut out gluten until you had the biopsy done. It's much worse to have to go back on after you've been off gluten for a while. There's no way I could ever do the gluten challenge after being off gluten for even a month because my reactions got so dramatically worse.  Stress definately can trigger celiac- before I was diagnosed - it got the worst after surgery and after a stressful time planning my daughters wedding. 
    • Hi not diagnosed celiac, Welcome to the forum! Your doctor should be sent to remedial celiac disease training.  Since that probably won't happen, I suggest you find a new doctor.  He doesn't know what he's doing when it comes to diagnosing celiac disease. You should not have gone gluten-free before completing all celiac disease testing.  The testing for celiac disease depends on the immune reaction being active.  Removing gluten before testing removes the antigen that causes the immune system to react, and lowers the chances of getting a correct test result dramatically.  The University of Chicago celiac disease center recommends: ******************************************** http://www.cureceliacdisease.org/faq/what-is-a-gluten-challenge/ Prior to blood testing we recommend 12 weeks of eating gluten. Prior to an endoscopic biopsy we recommend 2 weeks of eating gluten. In the case of a severe reaction to gluten, a medical professional may opt to shorten the 12-week challenge and move immediately to an endoscopic biopsy. May, 2013 ******************************************** So you will need to go back to eating gluten before your endoscopy.  That may cause worse symptoms than before when you were eating gluten.  So it would have been better to do all testing before going gluten-free. Can you search for a celiac disease support group in your area?  They exist in many parts of the USA and world.  They can be a good place to get a knowledgeable doctor recommendation.  There is also a doctors subsection of this forum where you can search to see if any doctors in your area were recommended.
    • Hi All, I'm new to this and very confused! I have Lea & Perrins WC sauce, it lists it's first ingredient as Malt Vinegar.  I have the Coeliac Society of Ireland Food List 2015 here, and it says "All Vinegars are Gluten Free including Malt Vinegar." Doesn't that mean that L&P Worcestershire sauce is safe?   Their website states " Lea & Perrins® Worcestershire Sauce is cholesterol free, fat free, preservative free, gluten free and has 80% less sodium than soy sauce. " I'm cooking for my coeliac niece, can't afford to make a mistake!
    • I get these crazy cravings for some things I can not eat anymore. Not only am I diagnosed with celiac but I also have a allergy to corn, olives, sesame, peanuts, and intolerance to yeast, soy, dairy, and a very low tolerance for carbs/sugars, Top it off with I can not digest meats or egg yolks, they just give me the burps and come up later.
        To deal with these I find myself turning to Republic of Teas (They have a great desert tea line up all certified gluten-free) and sweetening them with monk fruit extract, or stevia. And I find myself making Puddings bases that I use for shakes, dips, and ice-cream for meals. The puddings are normally a blend of cashew, or almond milk with a thickening agent like agar agar, pectin, or knoxx gelatin, blended with a sweetener like xylitol, swerve, stevia, monk fruit or a combination. And flavored with Lor Ann Oils (all gluten-free certified and you can find the kosher ones listed as such) super strength flavors or fountain syrups to match something I can not eat normally a combination of two flavors (Strawberry Cheesecake, Banana and Carmel, Cookies & Cream, etc) Then I add a fat that matches best, like almond butter, cashew butter, hemp butter, ground flax seed, coconut flour, chocolate, Pumpkin seed butter or a combination) These bases are normally blended up and consumed with 1-2 scoops of protein powder and eaten with steamed vegges as a side dip or loaded into a ice cream maker for a desert after my meals.      Also found myself making desert soups....like a pumpkin soup that taste like pumpkin pie. I am sure we all have our little quirks but this is one of mine for getting that sweet craving taken care of. Most premade items are off my list due to the allergies and it seems most companies use the oils, starches I am allergic to as non stick or thickening agents, Even the semi safe ones tend to put way to much sugars in them and I find myself only being able to nibble . There is also my little binge issues with almonds, pumpkin seeds, and, cocoa but that was explained to me as normal And on my most craving for peanuts I have found sancha inchi powder to work great, The Powder itself taste like the girl scout peanut butter cookie sandwich from my childhood, And is great mixed with a bit of almond milk into a butter or used in baking and smoothies. Before this I have been making Artisan blends of almond butter for years and even made a market selling them to pay  for my own consumption. Baked goods wise I have a bunch of recipes I make for others and sell at markets and this allows me to nibble on a sample to check it, as most contain a bean or gluten-free Harvest Oats/Flour in them and the carbs from that and the coconut sugars bother me. Still helps with cravings there, I only have 2 recipes that sell good and are safe for me to eat full servings of but are so expensive as they use almond and coconut flours, low sugars/xylitol and are paleo that I only can afford to make them once a month. Posting to hear about some odd and out there ways others deal with substitutions and cravings. Please do not bash mine as odd as they might be as they keep me from going crazy. (Yes I know DROP THE OATS, fact is I only get them when tasting stuff and they are gluten-free Harvest, the only ones I have never gotten glutend with)  
    • After suffering pretty much all year with one illness after another I've finally managed to get a diagnosis and it turns out to be celiac. After my doctors consistently failing to even consider the possibility it might be that (as opposed to "IBS" or "stress") I kept pushing for the Iga TTg test and it was off the charts with a score of >128... may as well fail it in style I guess. So here I am at the start of what feels like the end of my life as I know it. Been doing nothing but reading for the past week and frankly it's terrifying. Here's a few things that are going round in my head and I'd really appreciate your thoughts with. Apologies if it's a bit of an essay  Diagnosis I'm still furious at my doctors for not even entertaining the thought that celiac could be the root cause of all my ills. Given the blood test is so simple it feels almost negligent that they don't run this right at the start to rule it out. Instead I got subjected to poisons like Omeprazole which made me even more ill, whilst being told the physical symptoms were all in my head. Just as well I knew better and kept hitting up Google until my self-diagnosis was proved correct... to think these people get paid highly to be so incompetent makes my blood boil. Does feel good having outwitted the so-called professionals though. Seems 9 months is comparatively quick from symptoms to diagnosis compared to some others that have gone years with the problems so could be worse I guess. Food and diet I'm male vegetarian (non-negotiable) which makes this even harder as so many of my protein sources are now ruled out. Seems many with celiac were having trouble losing weight whereas I'm in the opposite situation. Already lost best part of a stone in the past few weeks and it's becoming noticeable now. The MyFitnessPal app reckons I need 2600 calories a day to maintain \ gain weight - no idea where that's going to come from. On top of that I read sites like Gluten Dude where even the Gluten Free foods are seen as poisons and going on extreme diets like Paleo \ SCD are the only real way forward. Again being veggie makes that practically impossible and if I'm unlucky enough to end up with the dairy issues as well I'm well and truly stuffed. Right now I'm trying the gluten-free Quorn products to see how I go, as well as more eggs etc. Porridge has been my go-to breakfast in the mornings for a while after I cut out bread whilst self-diagnosing but depending on where you read even that's a potential problem (currently using gluten-free porridge oats and seeing how it goes) Seems many gluten-free people have to go right back to basics and cook everything from scratch. That's a problem for me as I'm utterly hopeless on that front and time doesn't permit waiting hours just to prepare one meal. Seems nigh-on impossible to do day-in, day-out. Health Rightly or wrongly right now I see this diagnosis as a death sentence long-term. Looks like it brings other associated illnesses with it and this particular article really scares me: http://scdlifestyle.com/2012/03/the-gluten-free-lie-why-most-celiacs-are-slowly-dying/ I've only really had noticeable symptoms for the past year or so but wonder how long this has been going on for and what damage has already been done. All seems to have started from when I turned 30 (knew I was dreading that age for a reason) and right now I wonder how long I'm going to last before the really bad stuff starts. One of the other illnesses I'd considered as a possibility before getting diagnosed was Hashimoto's Thyroiditis; now it seems that's closely linked with Celiac so may not be out of the woods with that yet either. Just seems to be one big list of illness all triggered from the same point One positive change I've noticed thus far since cutting out gluten is that bloating seems to have gone down and bowel movements are better. Still getting headaches and muscle twitching, which could be as much a withdrawal symptom from gluten as anything else.  Some sites were suggesting stopping exercise whilst withdrawing but I can't face that as it's the only thing keeping me going at present. Again will keep going as-was and see what happens. Then to top it off it sounds like the next step is the biopsy - I'm scared of being put out for the procedure as a member of family went into hospital a few years back for something supposedly routine and never came back out. From what I've been told it's important to have done though as it shows just how broken the villi are so another thing to worry about in the meantime. I've just read on another thread that you have to be on gluten to have the test, that's another kicker after having started to cut it out the diet. With such a high blood test Iga-TTg score isn't it almost certain that celiac is the cause and the endoscopy in this case is just confirming levels of damage? OK means I can have a final blow-out eating all the "bad" foods but no doubt with all the side effects that come with it... Social life Seems like despite there being some gluten free options in certain restaurants (granted better now than years ago) I'm going to be hugely limited in food options. Either sitting on the side looking on or just plain not able to go out much anymore. Already had the first hitting-home moment watching colleagues eating pastries that were brought in while I just have to look on... then it dawns that this is never going to get better... urghhh Family life I'm really struggling to accept this lifelong illness and loss of health and it's taking a toll on the people around me at the moment. They won't be going gluten-free so will have to take my chances with the mixed kitchen environment; already gone with split toasters etc. so can't do much more than that. Dating Basically seems game over on that front, unlike many who are diagnosed with understanding partners \ spouses I'm still in the dating game, which is judgemental enough as it is without all the complications that the gluten issues bring. I'm reading even kissing someone with lipstick \ make-up is apparently a big no-no... once any date hears that they won't be coming back... forever alone status confirmed is how it looks right now. Overall feelings I still can't quite figure out if this illness was in me all along and just hasn't flared up enough to notice until now or whether the extreme stress I've been under for the past year or so has triggered it. If the second scenario is correct I can't stop thinking about the events that all led up to this almost year-long bout of ill health and life-changing diagnosis. Can celiac be brought on by stress alone or realistically was I always a ticking timebomb just waiting to be set off? For every person I see that's had a positive change after cutting out gluten (and getting by with reasonably achievable adjustments) there seems to be 10 others with horrible side-effects and long-term complications. Right now the future feels rather bleak - like all hope just been taken away. Help???
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,643
    • Most Online
      3,093

    Newest Member
    moojoo
    Joined