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Can't do this...Beyond PO'ed!!!


Another PO'ed Celiac

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Another PO'ed Celiac Apprentice

42 year old mom of 3, just diagnosed in December...Merry Christmas to me.  Biopsy Marsh Score 3A plus the following blood work:

IgA, Serum    196 mg/dL    80 - 463 mg/dL

Gliadin Antibody (IgA)    22 U    <20 U
Gliadin Antibody (IgG)    52 U    <20 U
   
Tissue Transglutaminase Antibody    14 U/mL    U/mL

Doc says yep you've got Celiac.  Avoid gluten and you'll be fine.  But I don't have intestinal problems.  I got the gastric sleeve surgery nearly 4 years ago and lost close to 150 lbs.  If I don't make sure to take magnesium, I get constipated due to the pain meds I'm on, but my problems are more neurological, leading me to think I could have Gluten Ataxia.  It describes me pretty well.  Although there's no mention of the fact that I can't stay awake without stimulants, can't focus or get anything done to the point of being on disability and all the back pain and ETD (from multiple ear tube surgeries as a kid).  Pretty sure my dad has DH (although apparently all the dermatologists he sees are idiots and no one has ever mentioned Celiac or DH to him even though he has the most classic looking rash on his knees and elbows that I've ever seen...oh and is pretty short at 5'3) but he doesn't have any intestinal trouble at all.  

Ok so denial question:  Is it possible to have these results and NOT have Celiac?  Or to have some other similar condition or temporary Celiac or anything else?

How the hell am I supposed to get through withdrawal?  2 days gluten free and I felt like death and pretty much preferred it to continuing on the gluten free life.  3 days in and I've broken out in a huge rash that I've not had before.  Super itchy on my hands and one of my inner ankles, but there are more small pink/red raised bumps that don't itch too, and then a bunch of flat super red dot ones over my whole trunk area, like Petechaie or whatever they are called.  6 days in and I couldn't take it anymore and downed a spoonful of cookie butter.  Almost instant relief.  My head stopped pounding and the bumps are going down and are much less itchy.  My intestines untied themselves from the knots they had been in.  My head cleared up (back to it's usual inattentiveness) and the fog lifted.  My brain started making connections and the anger has yet again set in.    

Ok great so now I have to start all over?  Wait...so withdrawal from gluten is just as bad as a junkie withdrawing from heroin...but junkies get all kinds of help to get through their withdrawal and they did it to themselves!  I didn't do this to myself, I had no choice.  What the heck do I get?  A pat on the head?  A youcanDOit!  That's just BS.  And then wait, so after I recover and am off gluten...then if I get accidently exposed or cross contaminated...then I will have the agonizing intestinal torture that is traditionally seen with Celiacs?  Which from what I'm discovering has happened to every single one of them I've ever read about or talked to.

Ummm...no thanks.  I don't want to be a pariah among my friends.  I don't want to be the difficult one who sits in the corner of the booth with the look on my face that says I'd rather run screaming out of the restaurant than watch you guys enjoy all the stuff I can't.  Oh and heaven forbid one of them take a bite and then sneeze in my direction, or fail to sanitize their hands before touching mine.  What if my husband eats a cracker and then kisses me?  Is this really what I'm in for... for the rest of my entire life?  

I already have a list of foods I can't tolerate due to my gastric sleeve surgery.  Now you throw in Celiac and there goes most of what's left.  So you've got to tell me here, is there really life after Celiac?  Or am I just the next casualty left in the wake of a corrupt government?  What am I supposed to eat?  I can't eat most grains or anything dense as it just sits in my stomach and makes me feel nauseated.  No rice or pastas, very limited meats, limited fruits due to a fructose intolerance and most veggies either cause me horrific intestinal pain or look as appetizing to me as a slug on a stick.  So I'm stuck eating cheese and nuts...literally, I should buy stock in Sargento Balanced Breaks.  Oh wait, but now I'm being told that Celiacs should probably be avoiding dairy too.  So nuts, for the rest of my life.  Well they say you are what you eat so I guess they got that right.  

I'm beyond frustrated.  Beyond angry.  Beyond 'well at least they make lots of gluten free stuff now'...cuz I swear the next person...I'm sure you're all with me on that one.  Starting to think maybe we all need to get together and sue the government for poisoning us.  Cuz I'm just speechless, and with a nickname of 'omg will you just shut up already'...there's just sooooo much wrongness here.       

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GFinDC Veteran

Welcome to the fun house PO'd ! :)  Or the forum I should say.  Maybe we should call you "squirrel" from now on? :)

It may seem impossible to live gluten-free at the moment, but there are a lot of us here who are doing it, and have for years.  Quite a few of us have additional food intolerances beyond gluten.  We may have to be a little creative in the kitchen to make things work.  But there really are a lot of food options available.  It might take a while to figure them out and get used to the change though.

I hope this doesn't raise your dander, but I think I read some where that people who have gastric bypass surgery are at a higher risk of developing celiac disease.  One of those side benefits they gloss over perhaps.

Your celiac is probably contributing to your symptoms.  Celiac can cause a multitude of symptoms, and they can be spread all over the body, not just in the gut.  So going gluten-free may alleviate symptoms you don't expect.

You'll find it does get easier in time.  I am not saying it gets easier in a few days, but over months or years you can adjust and adapt.  And feel better too.

Withdrawal is something we just have to go through.  There are some things that might help.  Pepto Bismol can help soothe the gut and reduce pain.  Plain aspirin can also help.  Peppermint tea can help get gas out if you are bloated.  Digestive enzymes can help process foods.

I had gut spasms about 6 weeks after going gluten-free.  Then they stopped.  It's good to read a lot on the forum while you are starting the gluten-free diet.  There is a lot to learn about celiac disease and the more you know the better you can take care of your body.

Celiac can definitely affect mood IMHO.  I used to have anger issues myself.  That went away after going gluten-free.

Simple, well cooked foods are a good idea for you.  Think hamburger instead of steak.  Cooked veggies instead of raw.  Dairy probably is not your friend to start out.  I am not suggesting cutting it out forever, but maybe a few months.  There are dairy subs you can use in the meantime.  Rice or almond milk, (not soy), Daiya cheese, etc,

It's good to go gluten-free, as we can end up eating a much healthier diet than many people do.  And the payback is not years away, but right now.

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Jmg Mentor
1 hour ago, Another PO'ed Celiac said:

Ok so denial question:  Is it possible to have these results and NOT have Celiac?  Or to have some other similar condition or temporary Celiac or anything else?

Sorry! Remember you have your reaction to removing gluten to add to the evidence for the prosecution. It's not normal to react like that, unless your body has a problem with gluten.

I don't think there's such a thing as temporary celiac either sadly. Like the cute puppy, it's not just for christmas...

Anyway, I think lot's of us here will have gone through similar emotions at one point or another. It may help you to take a look at something like this: Open Original Shared Link to see where you're currently at.

Of course it will get better and of course me or any other random person on the internet telling you as much won't be much help :P One thing you need to stop is giving in to a gluten craving. There's a big potential health pay off coming up for you, neurological symptoms take the longest time to resolve but when they do they can make everything in your life better, because you're no longer viewing it all through the brain fog, depression and malaise that gluten can cause. 

You may also find that you're able to cope with a much more varied diet once some healing has taken place. 

Chin up :)

 

 

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Another PO'ed Celiac Apprentice

Yeah I was wondering 

15 minutes ago, GFinDC said:
Quote

Welcome to the fun house PO'd ! :)  Or the forum I should say.  Maybe we should call you "squirrel" from now on? :)

That is one of my nicknames actually and my avatar in other places!

Quote

It may seem impossible to live gluten-free at the moment, but there are a lot of us here who are doing it, and have for years.  Quite a few of us have additional food intolerances beyond gluten.  We may have to be a little creative in the kitchen to make things work.  But there really are a lot of food options available.  It might take a while to figure them out and get used to the change though.

Doesn't help that I hate to cook and really find it pointless to go through all that work for a few bites of food when I'll be hungry again in a couple hours and reheated food just never tastes the same.

 

Quote

I hope this doesn't raise your dander, but I think I read some where that people who have gastric bypass surgery are at a higher risk of developing celiac disease.  One of those side benefits they gloss over perhaps.

I was wondering about that but being as that my dad has the DH and my daughters seem to react to gluten, I think it's in our family.  Although it could be that the sleeve (similar to gastric bypass with the smaller stomach but no bypass) along with the trauma of having an ovarian cyst rupture late last summer kicked it 'up a notch'.  But I've had severe ADD type symptoms my whole life.

Quote

 

Your celiac is probably contributing to your symptoms.  Celiac can cause a multitude of symptoms, and they can be spread all over the body, not just in the gut.  So going gluten-free may alleviate symptoms you don't expect.

You'll find it does get easier in time.  I am not saying it gets easier in a few days, but over months or years you can adjust and adapt.  And feel better too.

 

It could very well be but then I'm stuck in a catch 22 cuz I won't care until I get off the gluten but won't get off the gluten cuz I don't care (tell a 2 year old they can't have something and that they'll understand when they are 20 and you get the picture of me at the moment). 

 

Quote

Withdrawal is something we just have to go through.  There are some things that might help.  Pepto Bismol can help soothe the gut and reduce pain.  Plain aspirin can also help.  Peppermint tea can help get gas out if you are bloated.  Digestive enzymes can help process foods.

I can try Pepto but that won't help the migraine like head pain that lasts for days on end and has me curled up in the fetal position in my darkened room unable to get out of bed or the intense itching that has me clawing my skin off.  Aspirin isn't good on my sleeved stomach and peppermint anything gives me horrible heartburn.  I am trying out some digestive enzymes though.

Quote

 

I had gut spasms about 6 weeks after going gluten-free.  Then they stopped.  It's good to read a lot on the forum while you are starting the gluten-free diet.  There is a lot to learn about celiac disease and the more you know the better you can take care of your body.

Celiac can definitely affect mood IMHO.  I used to have anger issues myself.  That went away after going gluten-free.

 

I can't imagine dealing with this pain for that long, especially with this mood...ugh!

Quote

Simple, well cooked foods are a good idea for you.  Think hamburger instead of steak.  Cooked veggies instead of raw.  Dairy probably is not your friend to start out.  I am not suggesting cutting it out forever, but maybe a few months.  There are dairy subs you can use in the meantime.  Rice or almond milk, (not soy), Daiya cheese, etc,

Hamburger is a no go on this stomach.  A nice tender steak is easier to digest.  The denser a food is, the more sick it makes me feel after eating it.  Someone suggested it could be due to low acid so I may try something for that...but I have to watch the supplements too.  Having such a small stomach, I can't load it up with pills and supplements.  I've been doing cashew milk and I like that so far.  But if you take my cheese away...well there are gonna be problems.  The veggies I like have to be cooked and covered in cheese.  

One of the most frustrating parts of having this stupid sleeve surgery is that the foods I'm not supposed to eat are the ones that make my stomach feel the best!  Raw and/or unprocessed food tends to make me feel horrible while a small bowl of fake mashed potatoes can take me to a happy place. 

Quote


It's good to go gluten-free, as we can end up eating a much healthier diet than many people do.  And the payback is not years away, but right now.

 

So far not seeing a good payback...just pain, pain and some more pain topped with cramps and temper tantrums and a broken window and a few holes in the walls... not sure my house is gonna survive this either!

 

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Ennis-TX Grand Master

Just had flash backs of my first few weeks gluten-free. "Heroin" withdrawal, love how you put that. I have major issues myself with gluten ataxia, and constipation hits me for 4-6 days after exposure. I am on a mobile device now but when I get to a computer in the evening I will post some links to some supplements that make it easier. Wil also share some links for foods to make the gluten-free transition easier for you and your household. 

Check my profile, I have the EXACT issue with fruits, grains, carbs just mess me up. I will PM you some recipes this evening for some simple meals and some products I eat when I get those cravings. So much from what you posted touched home there, the ataxia issues drove me mad.

There are plenty of nut based cheeses, and I have bunch of cheese recipes, I will also share along with some paleo and nut based baked goods that are a god send.

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Ennis-TX Grand Master

Gluten Free alternative food list I compiled awhile back some of these might be good just to stock in your house for the rest of your family think of it as changing brands your guys use not going gluten-free. A gluten-free house hold and family diet will make it easier for you to stay safe in your house. You will find most staples available in a gluten-free version from some brand here https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/  

I might suggest trying to use miracle noodle and their rice version if you crave pasta/rice. I use it in stir fries, soups, etc to meet that craving, kelp noodles also go great for that. On supplements I find using nutritional yeast daily in each meal helps with niacin and b vitamins I honestly make cheese out of it, will Pm some recipe. I also suggest Liquid health brand products Stress and Energy, and Neurological Support 1tbsp each in a drink twice to three times a day, really helps with mood and energy levels better then anything else I have found. I personally also take Doctors best magnesium powder 2 full doses during the day in a beverage. Best thing about these supplements is they can be put in a drink and are not more pills.

Other things I find I like are Daiya Cheese blocks the smoked Gouda and the Havarti are great, Follow your heart makes some good provolone. So Delicious makes some good yogurts that are great also. Nut milk wise, cashew milk is one of the creamiest, almond can be good but I would suggest only using refrigerated versions of either of these as they are thicker with better flavor.   I personally do not handle meats well myself aside from small amounts of crab, swai, and salmon, red, tough, or greasy meats I just throw up, exception being this one longhorn burger that I can eat if I boil it or stew it for hours til it practically melts, stuff is so lean you do not even get grease from browning it.

https://www.celiac.com/forums/topic/116482-supplement-and-foods-you-take/

^ another list where I have posted what I take and asked others to do the same, Might talk to a doctor and see what you might be deficient in also as many of us develop issues with some things with our damaged intestines. I am PMing you those recipes also

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RMJ Mentor

I'm not sure you need to avoid dairy.  Some celiacs avoid it at first because their villi are so damaged that they don't make the enzyme that digests lactose and they have intestinal troubles due to the subsequent lactose intolerance.  If it doesn't cause digestive troubles for you, why avoid it?  I never cut it out.  

 

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GFinDC Veteran

Dairy is known to cause C for some people.  So it makes sense to cut it out for a while to see if that helps.  A lot of these issues are things we can only learn about by trying it ourselves.  We all have our own individual guts, and have our own individual reactions.  So we have to test for those reactions ourselves.  There is little help from the medical community that can identify food intolerances for us.  For new people with celiac, it is generally better to err on the side of caution than not.  The goal (IMHO) is to help people heal the fastest they can.  While dairy is not a problem for all people, it is a significant problem that affects many of us.  You don't know how it will affect you if you never cut it out.  It may not help anything, then again it might help a lot.

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squirmingitch Veteran

Ah yes, the ranting & raving, the this CAN'T be ME! The WTF????!!!! The you've GOT to be kidding me!!!! I think we've all been there to one degree or another in the beginning. {{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}} We're here to listen to your rants & raves, to your crying fits, have pity parties with you and celebrate when you make progress. Have you had any crying jag meltdowns at the grocery store yet? Put it on your to-do list. :P Most of us have had several of those when we started out. Oh yeh, & the feeling of wanting to kick someone (gluten eaters) in the face when they give you that freaking little speech about how lucky you are that there are sooooooooooooo many gluten free foods on the market these days. When that happens, try to remember they have no clue that many of those options are not on the table for you/us b/c of other food intolerances and things like your gastric sleeve. If you try to explain it to most of them, they still won't "get it". Only your closest, truest friends will be willing to hang in there and listen & actually hear & absorb what you're saying.

I was able to keep dairy however, I did go off it for a year in an effort to limit my iodine intake because of dh. You may wish to go low iodine for 2 weeks to see if it won't help that settle down. Go to Thyca.org & click on low iodine diet. Also, some who can't do full dairy certainly can tolerate certain dairy such as yogurt and aged cheeses (the harder cheeses). 

The anger......

Gluten affects your brain, your hormones, everything. I was never an angry person until......the latter years. Rage is a better word. I & doctors thought it was menopause related. Well maybe some but some was certainly gluten. Then there was the rage spurred by gluten withdrawal. Then I went back to "regular rage" (ha, ha) that was the lingering effects of what gluten had done to my mind & body functions. I am happy to say all that madness has gone; however, anger/rage is a big signal to me when I've been cross contaminated.

NSAID's make the rash worse -- ramp it up but Tylenol seems to be okay so if you have to take anything, Tylenol would be the go to med. 

I agree with the others that once you've gotten some healing under your belt, a LOT of the problems you've been experiencing may very well improve & even disappear. Almost all of us have had revelations of problems resolving that we never imagined were related to gluten damage. 

Keep a food & symptom log. It can be invaluable to identifying foods or ingredients that don't agree with you.

You say steak is easier on you then by all means eat steak! The way my hubs & I figure it, we might as well spend money on the best cuts & enjoy the heck out of them since there are many foods we can't enjoy any longer. Tenderloins and Rib Eyes comprise most of our beef expenditures.

BTW, I suffered with killer migraines for 25+ years. They were so severe that my doc prescribed me Immitrex injectibles & I would give myself the shots. Worked great & FAST! I've been gluten-free for 5 years & couldn't tell you the last time I had a migraine ~~~ it was probably sometime during the first year of gluten free. :)I am thrilled!!!!

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Marie7 Newbie
2 hours ago, squirmingitch said:

Ah yes, the ranting & raving, the this CAN'T be ME! The WTF????!!!! The you've GOT to be kidding me!!!! I think we've all been there to one degree or another in the beginning. {{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}} We're here to listen to your rants & raves, to your crying fits, have pity parties with you and celebrate when you make progress. Have you had any crying jag meltdowns at the grocery store yet? Put it on your to-do list. :P Most of us have had several of those when we started out. Oh yeh, & the feeling of wanting to kick someone (gluten eaters) in the face when they give you that freaking little speech about how lucky you are that there are sooooooooooooo many gluten free foods on the market these days. When that happens, try to remember they have no clue that many of those options are not on the table for you/us b/c of other food intolerances and things like your gastric sleeve. If you try to explain it to most of them, they still won't "get it". Only your closest, truest friends will be willing to hang in there and listen & actually hear & absorb what you're saying.

I was able to keep dairy however, I did go off it for a year in an effort to limit my iodine intake because of dh. You may wish to go low iodine for 2 weeks to see if it won't help that settle down. Go to Thyca.org & click on low iodine diet. Also, some who can't do full dairy certainly can tolerate certain dairy such as yogurt and aged cheeses (the harder cheeses). 

The anger......

Gluten affects your brain, your hormones, everything. I was never an angry person until......the latter years. Rage is a better word. I & doctors thought it was menopause related. Well maybe some but some was certainly gluten. Then there was the rage spurred by gluten withdrawal. Then I went back to "regular rage" (ha, ha) that was the lingering effects of what gluten had done to my mind & body functions. I am happy to say all that madness has gone; however, anger/rage is a big signal to me when I've been cross contaminated.

NSAID's make the rash worse -- ramp it up but Tylenol seems to be okay so if you have to take anything, Tylenol would be the go to med. 

I agree with the others that once you've gotten some healing under your belt, a LOT of the problems you've been experiencing may very well improve & even disappear. Almost all of us have had revelations of problems resolving that we never imagined were related to gluten damage. 

Keep a food & symptom log. It can be invaluable to identifying foods or ingredients that don't agree with you.

You say steak is easier on you then by all means eat steak! The way my hubs & I figure it, we might as well spend money on the best cuts & enjoy the heck out of them since there are many foods we can't enjoy any longer. Tenderloins and Rib Eyes comprise most of our beef expenditures.

BTW, I suffered with killer migraines for 25+ years. They were so severe that my doc prescribed me Immitrex injectibles & I would give myself the shots. Worked great & FAST! I've been gluten-free for 5 years & couldn't tell you the last time I had a migraine ~~~ it was probably sometime during the first year of gluten free. :)I am thrilled!!!!

Dear PO'd: I was recently diagnosed, as well. And while I would love nothing more than to sink my teeth into a delicious bear claw, what stops me dead in my tracks is this thought: "If I eat that, I am going to damage my small intestine." That seems to work for me, knowing that I am causing irreparable harm to my precious intestine. It has suffered enough, and it is up to me to make sure that it heals. I know it sounds weird, but I feel so maternal toward my small intestine now. It needs my tender care. 

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Another PO'ed Celiac Apprentice

I have NO gluten cravings.  Knowing it can attack my brain and cause irreversible damage...that was all the motivation I needed to make gluten laden food look unappealing to me.  I have a unique gift to train my brain into associating negativity with a particular food or substance.  I quit drinking Diet Pepsi cold turkey (it used to be the only thing I drank...even going through a 2 liter a day) when I discovered aspartame and the havoc it wreaks.  Made me so mad that I now glare at all soda and can't believe any one puts that in their body.  Stopped my Venti Caramel Macchiato latte every morning habit (I made them at home and LOVE coffee) cold turkey when I thought it was the dairy causing me some kind of problem.  Even something just as simple as knowing that the owner of Jimmy John's is a POS makes sub sandwiches not even appealing to me anymore.  What I cannot seem to do is trick myself into liking something I don't though.  The thing I cannot seem to do now, is get through the pain of this withdrawal.  I'm talking major PHYSICAL pain.  Migraines, muscle cramps, brain fog so thick I literally have blurred vision and forget where I am...6 days I went through that until I was a sobbing mess on the floor begging for relief.  The cookie butter didn't even taste good to me and I had a very hard time putting it in my mouth because I didn't even want it.  I just wanted RELIEF!  But within MINUTES....the pain in my head was gone.  The rash started subsiding and pain in my body lessoned.   Now tell me how I'm supposed to get through that when I'd rather die than go through that torture again?  I'd rather be put into a coma for a month while 'detoxing' than try to do that again.  And just in case you were wondering....YES it was THAT bad!

I'm trying to take it one day at a time and right now can't handle a bunch of information thrown at me.  I just need to know how to get through this first before I can think about anything else...

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emma6 Enthusiast
11 hours ago, Another PO'ed Celiac said:

I have NO gluten cravings.  Knowing it can attack my brain and cause irreversible damage...that was all the motivation I needed to make gluten laden food look unappealing to me.  I have a unique gift to train my brain into associating negativity with a particular food or substance.  I quit drinking Diet Pepsi cold turkey (it used to be the only thing I drank...even going through a 2 liter a day) when I discovered aspartame and the havoc it wreaks.  Made me so mad that I now glare at all soda and can't believe any one puts that in their body.  Stopped my Venti Caramel Macchiato latte every morning habit (I made them at home and LOVE coffee) cold turkey when I thought it was the dairy causing me some kind of problem.  Even something just as simple as knowing that the owner of Jimmy John's is a POS makes sub sandwiches not even appealing to me anymore.  What I cannot seem to do is trick myself into liking something I don't though.  The thing I cannot seem to do now, is get through the pain of this withdrawal.  I'm talking major PHYSICAL pain.  Migraines, muscle cramps, brain fog so thick I literally have blurred vision and forget where I am...6 days I went through that until I was a sobbing mess on the floor begging for relief.  The cookie butter didn't even taste good to me and I had a very hard time putting it in my mouth because I didn't even want it.  I just wanted RELIEF!  But within MINUTES....the pain in my head was gone.  The rash started subsiding and pain in my body lessoned.   Now tell me how I'm supposed to get through that when I'd rather die than go through that torture again?  I'd rather be put into a coma for a month while 'detoxing' than try to do that again.  And just in case you were wondering....YES it was THAT bad!

I'm trying to take it one day at a time and right now can't handle a bunch of information thrown at me.  I just need to know how to get through this first before I can think about anything else...

try having just a little bit of gluten each day and slowly cutting it down to nothing over a week or two, that's what I had to do. I cut gluten out cold turkey for a couple of days and had really severe withdrawal symptoms, constant headaches, nausea, dizziness, fainting it was so bad I couldn't do anything but stay lying down. so I was having a cracker or a bite of bread when the withdrawal symptoms were the absolute worst after a week I was completely gluten free, still had withdrawals for about 3 weeks but it slowly got better. I felt like I would never get through it but I promise it will get better :)

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OTDiva Newbie

*Hugs* I think we all felt like a homicidal tantruming toddler for the first 2ish weeks of being gluten-free.

 

For me, the detox was horrible. Besides the unending migraine I was having horrible cravings for carbs (cake, cookies, pizza). Thing is I never had cravings for those foods before gluten free. The thing that helped me was to find something I could eat with simple carbs (rice chex instantly got rid of my migraine), I think when going gluten-free part of withdrawal symptoms are also related to other aspects we are cutting out. Also, don't worry about changing other aspects of your diet (e.g. dairy) until you have the gluten part under control. IF you ever need to cut out dairy cross that bridge when you come to it.

It is emotional and hard and many people won't understand why you freak out.

But, as someone who was really really sick (not even intestional issue-or so I thought) I can tell you I never ever ever want to feel that way again. I didn't even know how sick I was until I started feeling better. Now, being gluten-free is not too hard most days. No matter how delicious that cake looks I'm not tempted by it because nothing is worth feeling how I used to feel or the immediate symptoms I get. It gets easier. It really does. 

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      14 year old with Celiac & EOE still suffering...

    2. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


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    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
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