Overwhelmed and unable to accept

[GFinDC]

It's a big change going gluten-free EGS1707.  Not just what you are eating is changing, but what all the gut bacteria in your gi system eat is changing.  That change can cause some upset by itself, as the gut bacteria balance needs to change and reset to hopefully a new normal.  I think it's best to avoid most carbs and sugar during that process.  But some people disagree with me,  The thing is, carbs and sugar feed lots of gas making bacteria, and that can cause various gi symptoms.  Dairy is also often a problem for new gluten-free'ers.  The enzyme that digests milk sugar is made by the villi in the small intestine.  Those villi are what the immune system destroys in celiac disease.  The villi usually recover, but it can take a while for the immune attack to stop destroying them.  So being able to digest dairy often comes back, but not always,

You could try some pro-biotics, but I am not sure which brand to recommend.  A study not long ago found many brands of pro-biotics contain small amounts of gluten.

It can be hard to find foods that don't cause symptoms when our GI system is irritated.  After you have been gluten-free a while that should ease up though.  There is an idea around that foods we eat a lot of are foods that we tend to become intolerant too.  That seems to have happened to me as I became intolerant to soy, dairy, nightshades, carrots, celery.  So that's just something to be aware of as a possibility.  That's why some people do a rotation diet, to avoid developing reactions from eating the same foods over and over.

One other thing that seems to happen often enough is that people who first go gluten-free say their symptoms from eating gluten later are stronger or worse than when they ate gluten all the time.

It could be you have gas in your stomach that is causing stomach acid to push up in your esophagus.  That might be causing your "acid".  Stomach remedies might help if they are able to get gas coming out of the stomach.  Peppermint tea is a good treatment to try.

Do check your vitamins for gluten, as not all are gluten-free.  I had reactions to Amy's products years ago and stopped eating them.  But more recently I have seen people post that they are ok with them.  I can do without them myself.

Oh, one thing I like for breakfast is rice cakes with some kind of natural peanut butter.   Soy-free for me.  Over here we have a company called Bob's Red Mill.  They make a breakfast cereal called Bob's Mighty Tasty gluten-free Hot Cereal.  It's pretty ok on a chilly morning with some peanut butter and other fixins.  Raisins or whatnot.  Or with olive oil and salt and pepper for a non-sweet cereal.

Going dairy free now won't affect any celiac testing you are contemplating.  But it might avoid some symptoms for you.  Good to hear your B-12 levels are doing ok!

 

 

[egs1707]

Got my first appointment with a gastro specialist next week so will see what comes of that - hopefully get some more sense than I've had from the medical profession so far!

The intolerances worry me, as does this cross reactivity theory as if any of those come into play as a vegetarian I'll end up wasting away  Already feel like that at the moment, seem to be losing energy levels, muscle strength and having these random inflammation reactions that aren't caused by gluten-containing foods.

Anyone done the Cyrex tests for cross reactivity - are they any good or just pseudo-science out to make money?

Contacted the multivitamin company I use and they've told me it's suitable for gluten free so hoepfully that's not the cause. 

Anyone gone the whole hog with toothpaste and shampoo too? Read something about Sodium Lauryl Sulfate causing issues so don't want to be doing all these food changes only to be ruined by something innocuous.

At the moment I feel like I'm dying some days the way my body is reacting to this change, it's like a vice grip on my muscles and gut that won't let go when it gets bad. Then there's the weird muscle twitching head pains, going for the ESR \ CRP tests tomorrow as I need the peace of mind (or diagnosis of something else if the worst happens)

[MarieK]

I'll leave all the expert advice to those who've already posted, done this a long time, and know better what they are talking about.  I'll just add that I'm a brand new diagnosee of Celiac's and today is my 3 week anniversary of getting the news and starting down the rabbit hole of all that this means for my life, and those people also in my life.  I'm there with you.  This thing is hard.  It's scary.  And mostly it's just overwhelming.  I have researched some amount most days of the last three weeks, and I just read until I just can't anymore and I step away from Google and do something else.  I know I have not gotten it all right so far, and I'm pretty sure I've already glutened myself once, and maybe twice (or the effects just lasted longer than I thought it would?).  But then the next day (or maybe two) I go back, and read some more, and I'm starting to feel more like this thing is doable.  Maybe also because I'm feeling better.  As a married with kids, female meat eater who was already eating low carb (so mainly meat, veggie, and dairy) there aren't a ton of similarities between us.  But I hear you.  You aren't in this alone, and the more of us that are diagnosed, the more awareness we spread to those around us and the easier all this will get.  I'm pretty sure, anyway.

[Rik]

Get a grip. You have to stop eating gluten. And that's all. You don't have terminal cancer, you are not a paraplegic. Go buy a cookbook and make some good wholesome food for yourself and stop moaning. 

[GFinDC]

Hi Egs1707,

My initial symptoms after first going gluten-free lasted about 6 weeks, and then began to stabilize some.  Not saying they all went a way, but did become more tolerable.  But I did seem to start reacting to very small amounts of gluten also, even minor cross contamination.   My darn toaster got me for instance.  Several other things got me, but I did learn after a while.  Simple meals, no processed foods, no dairy. plus time.  Eventually I did some elimination diets to identify other foods I was intolerant too.  I think elimination diets are the best way to go to identify problem foods.  I haven't tried Cyrex labs but I doubt their testing is worthwhile.  Your own body will tell you if you are intolerant to a food.  If it doesn't bother your body, then it's not a problem right?

I know some vegetarians eat a lot of soy, and personally I think that's a bad idea.  Soy has some negative effects in the body IMHO.  I agree, being a vegetarian is harder when you have to eat gluten-free.  Maybe you could do eggs and fish?  They are good sources of protein which your body needs while healing.  Otherwise there are avocados and peas, which are somewhat high protein for plants at least.  Nuts are good too.  I don't think there are any vegetarian processed foods I could eat now myself.  I react to soy and dairy and they put those in  many of them.  Also potato starch doesn't work for me.

You'll figure the food reactions out by yourself after awhile.  It may take some time, and new ones may crop up after a while too.  This celiac recovery process is or can be challenging.  I always try to get people to eat simple, whole foods at first, because it is more likely they will heal faster if they do that IMHO.  Also, a simpler diet with fewer ingredients is easier to understand and troubleshoot for reactions.  Some processed foods have 20 or more ingredients, where do you start?   Foods with 3 or less ingredients are a better choice IMHO.

Hang-in there.  You won't be in the initial stages of recovery forever.

 

[Mr. Pep'r]

2 hours ago, Rik said:

Get a grip. You have to stop eating gluten. And that's all. You don't have terminal cancer, you are not a paraplegic. Go buy a cookbook and make some good wholesome food for yourself and stop moaning. 

Wow, what a wonderful and heartfelt response in the "Coping With" forum.

 

 

[Mr. Pep'r]

To the OP, I wish I could say it'll get easier like some have alluded.  Sure, you're health will improve and you will feel better overall.  But life on the other hand will be more difficult and challenging than ever, at least that's the way it is for me.

My sensitivity to Gluten is extremely high and any form of cross contamination will alter my health.  I was diagnosed in 2007 and up until last year I was constantly getting sick, even with a 100% gluten free home and kitchen.  Last year I got violently sick after eatnig a meal and takeout from a supposedly "safe" restaurant I decided to STOP risking my health and putting my overall well being in the hands of others who didn't seem to really care.  And I am hear to say the last year my health has been the best since my diagnoses in 2007.

Now, here within lies the problem; what and where do I eat now?  In my area there are three dedicated gluten-free establishments that proved real meals and NOT cupcakes and brownies, and for this I am grateful.  But only 1 of the establishments is open for dinner, and hardly that since they close at 8pm during the week and close for dinner on the weekends.  So, socially there's nowhere for my wife and I to go out with friends.  Then there are the days of running around to appointments or stores, or being tied up longer than expected, there's nowhere or nothing for me to eat.  Trying to find a Super Market in areas I am not familiar with, or needing to go out of the way for a package of Boar's Head meat and gluten free chips gets old and really doesn't cut it, not to mention not at all healthy.  There's ZERO options for a quick meal when you have Celiac and I've had countless days of going hungry while trying to get the simplest of things completed.  Then there is my job, 2, 3, 4 days away from home at a time, with frozen or leftover food all the while trying to find some public microwave to heat them up in.  It has gotten to the point that I choke down my meals most of the time.  And then lastly there's vacations, my wife and I have not taken a 'real' vacation to destination since 2007.  The thought of trying to eat gluten-free in a foreign country seems impossible, not to mention the thought of spending thousands of dollars to risk getting sick only to spend my time on a bed or in a bathroom.

Celiac is more than just getting a grip and buying some Gluten Free Cookbook.  For me it has dramatically altered my life.  My level of sensitivity is now an unfortunate way of life for me, while those around me can just go out, fly away to and eat/enjoy whatever meal they decide to order. 

I don't think my post will make your problems and concerns go away, but rather let you know that you're not alone.    

Hope this help.

[egs1707]

On 07/10/2016 at 1:08 PM, Rik said:

Get a grip. You have to stop eating gluten. And that's all. You don't have terminal cancer, you are not a paraplegic. Go buy a cookbook and make some good wholesome food for yourself and stop moaning. 

Obvious troll is obvious...

It's not "just" a case of stopping gluten - just read a few threads on here and it seems the hell is only just beginning into a journey of food intolerance, contamination paranoia and complete loss of all enjoyment and flexibility around food.

Then add the proven increased risk of contracting another nasty autoimmune disease from the far-from-complete list of:

• Type 1 diabetes
• Thyroiditis
• Vasculitis
• Osteoporosis \ arthritis
• highly increased risk of cancers in the first year after diagnosis

It seems with this illness there's a sugar-coated vision of a healthier future with some minor adjustments but hiding behind the veil is a much darker reality that never gets better. Add to that the social isolation and stigma of having the "celiac" label and hope is in short supply.

Random food intolerance question... when people say they're unable to eat dairy, grains and so on are we talking about reactions that are going to damage the body in the same way gluten does or more a case of discomfort and a feeling of malaise?

[cyclinglady]

2 hours ago, egs1707 said:

Obvious troll is obvious...

It's not "just" a case of stopping gluten - just read a few threads on here and it seems the hell is only just beginning into a journey of food intolerance, contamination paranoia and complete loss of all enjoyment and flexibility around food.

Then add the proven increased risk of contracting another nasty autoimmune disease from the far-from-complete list of:

• Type 1 diabetes
• Thyroiditis
• Vasculitis
• Osteoporosis \ arthritis
• highly increased risk of cancers in the first year after diagnosis

It seems with this illness there's a sugar-coated vision of a healthier future with some minor adjustments but hiding behind the veil is a much darker reality that never gets better. Add to that the social isolation and stigma of having the "celiac" label and hope is in short supply.

Random food intolerance question... when people say they're unable to eat dairy, grains and so on are we talking about reactions that are going to damage the body in the same way gluten does or more a case of discomfort and a feeling of malaise?

I have to disagree.  I don't think that Rik is a troll.  I think he was trying to let you know that there are far more worse illnesses to have than celiac disease.  He is right (though blunt).  celiac disease is the only AI that has a known trigger -- gluten.  I only wish my young niece had celiac disease.  Instead she is dealing with Crohn's and had no idea what can trigger a flare (the same for her cousin who has Lupus).  ?

This a great forum where you can get great information, hold a pity party, and discuss celiac disease when your family and friends are sick of talking about it.  

I understand that you are still in the grieving process, but I can assure you that you can get well and be happy.  We have plenty of members who have gone on with their lives and are too busy to post. 

I have many of those same dreaded diseases you listed: diabetes, Hashi's, osteoporosis (fractures), a generic anemia and some anaphylactic allergies.  But I don't dwell in them.  I can not.  (Though when exposed to gluten I tend to focus on them until my antibodies calm down).  

I work, am a mother,  volunteer with the Scouts, Band Boosters, play in a Community Band, teach some exercise classes -- well...I just live life.  

Remaining gluten-free is hard, but not impossible.  You will figure it all out.  

Take care.  Try to think positively!  It helps.  ?

[cyclinglady]

On October 7, 2016 at 8:41 AM, Mr. Pep'r said:

To the OP, I wish I could say it'll get easier like some have alluded.  Sure, you're health will improve and you will feel better overall.  But life on the other hand will be more difficult and challenging than ever, at least that's the way it is for me.

My sensitivity to Gluten is extremely high and any form of cross contamination will alter my health.  I was diagnosed in 2007 and up until last year I was constantly getting sick, even with a 100% gluten free home and kitchen.  Last year I got violently sick after eatnig a meal and takeout from a supposedly "safe" restaurant I decided to STOP risking my health and putting my overall well being in the hands of others who didn't seem to really care.  And I am hear to say the last year my health has been the best since my diagnoses in 2007.

Now, here within lies the problem; what and where do I eat now?  In my area there are three dedicated gluten-free establishments that proved real meals and NOT cupcakes and brownies, and for this I am grateful.  But only 1 of the establishments is open for dinner, and hardly that since they close at 8pm during the week and close for dinner on the weekends.  So, socially there's nowhere for my wife and I to go out with friends.  Then there are the days of running around to appointments or stores, or being tied up longer than expected, there's nowhere or nothing for me to eat.  Trying to find a Super Market in areas I am not familiar with, or needing to go out of the way for a package of Boar's Head meat and gluten free chips gets old and really doesn't cut it, not to mention not at all healthy.  There's ZERO options for a quick meal when you have Celiac and I've had countless days of going hungry while trying to get the simplest of things completed.  Then there is my job, 2, 3, 4 days away from home at a time, with frozen or leftover food all the while trying to find some public microwave to heat them up in.  It has gotten to the point that I choke down my meals most of the time.  And then lastly there's vacations, my wife and I have not taken a 'real' vacation to destination since 2007.  The thought of trying to eat gluten-free in a foreign country seems impossible, not to mention the thought of spending thousands of dollars to risk getting sick only to spend my time on a bed or in a bathroom.

Celiac is more than just getting a grip and buying some Gluten Free Cookbook.  For me it has dramatically altered my life.  My level of sensitivity is now an unfortunate way of life for me, while those around me can just go out, fly away to and eat/enjoy whatever meal they decide to order. 

I don't think my post will make your problems and concerns go away, but rather let you know that you're not alone.    

Hope this help.

One of the best investments we made (not necessarily financial) was getting an RV.  We travel all over and bring our gluten-free kitchen with us.   We have also traveled internationally successfully.   I can highly recommend Italy!

 You and your wife deserve a vacation! 

[katesyl]

6 minutes ago, cyclinglady said:

I have to disagree.  I don't think that Rik is a troll.  I think he was trying to let you know that there are far more worse illnesses to have than celiac disease.  He is right (though blunt).  

 True, but he just made an account and that was his only post so far.... lol it IS a support group after all

[katesyl]

3 hours ago, egs1707 said:

Obvious troll is obvious...

It's not "just" a case of stopping gluten - just read a few threads on here and it seems the hell is only just beginning into a journey of food intolerance, contamination paranoia and complete loss of all enjoyment and flexibility around food.

Then add the proven increased risk of contracting another nasty autoimmune disease from the far-from-complete list of:

• Type 1 diabetes
• Thyroiditis
• Vasculitis
• Osteoporosis \ arthritis
• highly increased risk of cancers in the first year after diagnosis

I agree. I have developed health anxiety. Major. 

[egs1707]

18 minutes ago, cyclinglady said:

This a great forum where you can get great information, hold a pity party, and discuss celiac disease when your family and friends are sick of talking about it.  

Unfortunately my so-called friends think it's one big joke and so far doing a great job of making me feel even worse about it. Constant jibes and comments like "nice dose of gluten on that for you" when making tea and so on. Really showed their true colours over the past few weeks that's for sure.

Can't help but remember a quote I saw, I think on a thread here that went along the lines of "it's not that every celiac is a Debbie Downer, it's just that there is no good news".

I agree. I have developed health anxiety. Major. 

Hard not to when everywhere you read says the risk of developing the associated diseases goes right up. Add to that the horrible effects coming off gluten has given so far, plus the added complications of GI damage and intolerances all gets too much.

On top of that feeling ill from the side effects and not being able to eat out means I've already started missing social events, so instead ending up alone on the web to read more of the above so the cycle carries on until I get another barrage of tests to find out if anything else in my body is broken.

ESR and CRP blood test result next, followed by first gastro specialist appointment. Is this what life becomes now?

[katesyl]

1 minute ago, egs1707 said:

Hard not to when everywhere you read says the risk of developing the associated diseases goes right up. Add to that the horrible effects coming off gluten has given so far, plus the added complications of GI damage and intolerances all gets too much.

On top of that feeling ill from the side effects and not being able to eat out means I've already started missing social events, so instead ending up alone on the web to read more of the above so the cycle carries on until I get another barrage of tests to find out if anything else in my body is broken.

ESR and CRP blood test result next, followed by first gastro specialist appointment. Is this what life becomes now?

I agree with you. Also, the more you worry about your health the worse it actually gets. It really is a viscous cycle. Having said that, I'm glad you have doctors who want to continually follow up. I got diagnosed three years ago and have felt my follow ups to be insufficient. I had a CRP this summer for the first time because of some neck swelling I had. It was high. I ate clean, unprocessed, dairy-free, foods for two weeks and had a repeat CRP and it was normal again. I need to keep reminding myself of this. I think it's the best way to eat but I have trouble with it. I also have had trouble getting myself to quit going out to eat in general... I have put myself at risk too much. 

[cyclinglady]

10 minutes ago, katesyl said:

 True, but he just made an account and that was his only post so far.... lol it IS a support group after all

I have been really active on this forum for three years.  Probably, (no way to prove this) but at least 20% of all posters post once despite getting good responses from other members.   Maybe they got the information they needed or said what they needed to say.  Who knows?  

[egs1707]

1 minute ago, katesyl said:

I agree with you. Also, the more you worry about your health the worse it actually gets. It really is a viscous cycle. Having said that, I'm glad you have doctors who want to continually follow up. I got diagnosed three years ago and have felt my follow ups to be insufficient. I had a CRP this summer for the first time because of some neck swelling I had. It was high. I ate clean, unprocessed, dairy-free, foods for two weeks and had a repeat CRP and it was normal again. I need to keep reminding myself of this. I think it's the best way to eat but I have trouble with it. I also have had trouble getting myself to quit going out to eat in general... I have put myself at risk too much. 

Oh no they're not putting any effort in at all, requires constant complaining to get anything out of them. Only got diagnosed because I had a list of tests from my Google research that I wanted done (still haven't completed the list yet, thyroid is next up)

ESR \ CRP is particularly scary because of GCA \ Temporal Arteritis and right now I have tender temple area that gives a rush of anxiety if I put any kind of pressure on there. Hoping like hell it's referred muscular \ nerve pain as the other option is too scary to even contemplate 

Dairy-free is the one I'm really trying to avoid unless I have absolutely no choice, without cheese and milk that's another huge loss of protein source for me and can't see what to replace it with.

[cyclinglady]

13 minutes ago, egs1707 said:

Unfortunately my so-called friends think it's one big joke and so far doing a great job of making me feel even worse about it. Constant jibes and comments like "nice dose of gluten on that for you" when making tea and so on. Really showed their true colours over the past few weeks that's for sure.

Can't help but remember a quote I saw, I think on a thread here that went along the lines of "it's not that every celiac is a Debbie Downer, it's just that there is no good news".

Hard not to when everywhere you read says the risk of developing the associated diseases goes right up. Add to that the horrible effects coming off gluten has given so far, plus the added complications of GI damage and intolerances all gets too much.

On top of that feeling ill from the side effects and not being able to eat out means I've already started missing social events, so instead ending up alone on the web to read more of the above so the cycle carries on until I get another barrage of tests to find out if anything else in my body is broken.

ESR and CRP blood test result next, followed by first gastro specialist appointment. Is this what life becomes now?

That is horrible!  Time to dump those "so-called friends"!  

[egs1707]

Just now, cyclinglady said:

That is horrible!  Time to dump those "so-called friends"!  

Indeed, unfortunately most of the ones my age react the same way... social isolation here I come...

[katesyl]

2 minutes ago, egs1707 said:

Oh no they're not putting any effort in at all, requires constant complaining to get anything out of them. Only got diagnosed because I had a list of tests from my Google research that I wanted done (still haven't completed the list yet, thyroid is next up)

ESR \ CRP is particularly scary because of GCA \ Temporal Arteritis and right now I have tender temple area that gives a rush of anxiety if I put any kind of pressure on there. Hoping like hell it's referred muscular \ nerve pain as the other option is too scary to even contemplate 

Dairy-free is the one I'm really trying to avoid unless I have absolutely no choice, without cheese and milk that's another huge loss of protein source for me and can't see what to replace it with.

I am so sorry that you have to beg them to look after your health. I wish you the best for your test results to come back okay! 

[ravenwoodglass]

You need to keep in mind that now that you have been diagnosed and have the chance to heal your chances of developing another AI disease goes way down. There are members here who went undiagnosed for decades and didn't develop cancer, diabetes, etc. Are there some that will develop some other AI disease years after they have healed, sure. But they might have gotten one even without celiac.  Celiac is the pits and it does make having a social life more difficult when food is involved but things are much easier now than they were even 14 years ago when I was first diagnosed.  Restaurants and people in general are becoming more knowledgable every day.

 

 

[egs1707]

8 minutes ago, katesyl said:

I am so sorry that you have to beg them to look after your health. I wish you the best for your test results to come back okay! 

Sadly it does seem that the health profession is now driven by money and some shady dealings with pharmaceutical companies rather than putting the patient's well being first. Such is the way the world seems to work these days.

Thanks for the good wishes, fingers crossed  

[ravenwoodglass]

13 minutes ago, egs1707 said:

 

ESR \ CRP is particularly scary because of GCA \ Temporal Arteritis and right now I have tender temple area that gives a rush of anxiety if I put any kind of pressure on there. Hoping like hell it's referred muscular \ nerve pain as the other option is too scary to even contemplate 

 

With all the stress you are under this is likely a tension headache. Do you do anything for relaxation? Yoga, meditation etc? That might help. Also if your insurance will cover it acupuncture might be quite beneficial. It helped me a great deal before diagnosis.

[egs1707]

3 minutes ago, ravenwoodglass said:

With all the stress you are under this is likely a tension headache. Do you do anything for relaxation? Yoga, meditation etc? That might help. Also if your insurance will cover it acupuncture might be quite beneficial. It helped me a great deal before diagnosis.

Yeah I do some relaxation class once a week (could do with it every day at the moment!) which really helps for the time I'm there. Never able to replicate it outside for some reason, must be the environment that makes a difference.

Unfortunately I had a bad reaction with acupuncture when treating a sports injury which actually flared the muscles up so may have to give that one a miss but thanks for the suggestion.

Also had one of these odd red spots appear in that area which may be pulling the skin and causing some of the tenderness. May be that dermatitis issue that gets raised a lot on here? Oddly never had any of that until I went gluten-free but it's started with a vengeance in the last few weeks.

[emma6]

On 07/10/2016 at 11:08 PM, Rik said:

Get a grip. You have to stop eating gluten. And that's all. You don't have terminal cancer, you are not a paraplegic. Go buy a cookbook and make some good wholesome food for yourself and stop moaning. 

i don't see the point of posting this. you don't know their life and making snap judgements when someone is asking for help is only going to make them feel worse.

honestly eating gluten free is the easiest part. what sucks is the horrendous symptoms and associated diseases that have made me being unable to work, study, drive, exercise, travel and socialise for the last year.

and on top of that being treated like its not a big deal or getting accused of being dramatic or faking illnesses by doctors and friends because nobody can comprehend that you can be so sick from just celiac disease

[Peaceflower]

On 07/10/2016 at 1:08 PM, Rik said:

Get a grip. You have to stop eating gluten. And that's all. You don't have terminal cancer, you are not a paraplegic. Go buy a cookbook and make some good wholesome food for yourself and stop moaning. 

And you know MarieK do you?