I need support from those who know

[EasterLily]

Today is day 7 of my gluten free diet. Withdraw symptoms starting yesterday and have  gotten more intense. I've had a pounding headache for 3 days now and nothing seems to ease them. I can't sleep so I am absolutely exhausted and run down. I have little to no energy. Even talking is an effort. My throat feels swollen and it feels like I'm about to choke or gag. It's causing a great deal of anxiety. My nausea is still in full force, but it feels different since yesterday, if that makes any sense. My body hurts, I 'm lightheaded, my arthritis is flared, my stomach is gurgling, I have indigestion that won't go away, I am having weird stomach 'spasms' (so my doctor calls them. It feels like butterflies ingthe top of my stomach) and I am starved!! But because of the nausea - that I've had for a month now - I can't eat much at once. And because of my acid reflux I cant' go to bed with food in my stomach, so my last snack has to be by 7:30. By the time I wake up I am so hungry I feel like I'm going to pass out. I can't handle these withdraw symptoms. I so much want to run into the kitchen and eat my husbands white bread. I was crying this morning and I'm really struggling. My kids seem to be minimizing my condition and that is hurtful.  Only you can really understand the frustration and depression that comes with this. Any advice for coping would be greatly appreciated. Thank you. 

[captaincrab55]

Easterlily,   Are you sure you're eating a strict gluten-free diet??

 

[EasterLily]

12 minutes ago, captaincrab55 said:

Easterlily,   Are you sure you're eating a strict gluten-free diet??

 

I am pretty sure I am. Nothing goes in my mouth until I've read the label. I've replaced toaster, all plastic kitchen utensils, pots and pans except one stainless steal pot which I read is ok to keep using. All my prescription meds are gluten free. I keep my food and kitchen utensils separate from my husbands. I started feeling better the other day. Nausea was almost gone, but this morning I felt the worst I have ever felt. I'm not sure what I'm missing. 

[deb445]

EasyerLily,

I'm so sorry to hear about your difficult days! Your stomach is going to go through tremendous healing, as are you. Please remember to be kind to yourself  

I wondered if you have considered probiotics to assist with the healing? I found kombucha & kefir to be great. Your swollen throat and energy levels made me think thyroid. Is this a consideration? 

 

Kind regards

[EasterLily]

1 minute ago, deb445 said:

EasyerLily,

I'm so sorry to hear about your difficult days! Your stomach is going to go through tremendous healing, as are you. Please remember to be kind to yourself  

I wondered if you have considered probiotics to assist with the healing? I found kombucha & kefir to be great. Your swollen throat and energy levels made me think thyroid. Is this a consideration? 

 

Kind regards

Thank you deb445. I have had my thyroid tested several times over the years and it always came back normal. I was thinking maybe withdraw kicked the thyroid in to overdrive and it's putting out more than it should. I have other withdrawl symptoms;  headache, bloating, fatigue.  I have been banging my head against the wall trying to figure out how I could be improving and a day and a half later feel worse than I ever have.  Because I am new at this, anything I use, consume, cook or touch is checked for contamination and cross-contamination. I did find one cross  contamination today. My husband used the peanut butter and jelly to make his sandwich which is on whole white bread or sometimes wheat bread, but that was after I started feeling like death warmed over.  So he may have inadvertently cross contaminated something else that I'm not aware of. Actually, now that I think of it, that's the same jar of peanut butter and jelly that I used on  wheat bread before I started this diet  and I have been eating peanut butter all week for the protein. Hmmmmm......

[Ennis-TX]

More fiber and fat will help with the feeling of needing to eat more, try whole pumpkin seeds, almonds, cashews, hemp seeds. etc great for snacks, perhaps taking a bit of pumpkin seed protein powder before bed? It helps you sleep actually. I have a bunch of gluten-free recipes for some stuff I used to make to crush cravings, like a vegan cookie dough pie recipe that you can just use raw and eat. Garlic breads, cheddar biscuits, cinnamon cake, most of these I have posted in the baking/recipe section. Once over the withdrawal move to a whole foods diet for a few weeks to jump start your healing. If you have any anxiety, nerve, fog, or other issues you could also have deficiencies that have arisen from the intestinal damage and you should be tested for them common ones are magnesium, iron, b-vitamins, vitamin D, and E Niacin etc. I will post some helpful links for you like where to find foods, where to order them online, and a list of things others take for their issues.

https://www.celiac.com/forums/topic/91878-newbie-info-101/

https://www.celiac.com/forums/topic/117090-gluten-free-food-alternatives-list/

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

Just hang in their and do not give in. Also few other tips about a shared house, Freezer paper is a life saver just rolling it out for a clean prep surface when fixing foods, gloves might also help while fixing meals, and disposable utensils.

[flowerqueen]

10 hours ago, EasterLily said:

Today is day 7 of my gluten free diet. Withdraw symptoms starting yesterday and have  gotten more intense. I've had a pounding headache for 3 days now and nothing seems to ease them. I can't sleep so I am absolutely exhausted and run down. I have little to no energy. Even talking is an effort. My throat feels swollen and it feels like I'm about to choke or gag. It's causing a great deal of anxiety. My nausea is still in full force, but it feels different since yesterday, if that makes any sense. My body hurts, I 'm lightheaded, my arthritis is flared, my stomach is gurgling, I have indigestion that won't go away, I am having weird stomach 'spasms' (so my doctor calls them. It feels like butterflies ingthe top of my stomach) and I am starved!! But because of the nausea - that I've had for a month now - I can't eat much at once. And because of my acid reflux I cant' go to bed with food in my stomach, so my last snack has to be by 7:30. By the time I wake up I am so hungry I feel like I'm going to pass out. I can't handle these withdraw symptoms. I so much want to run into the kitchen and eat my husbands white bread. I was crying this morning and I'm really struggling. My kids seem to be minimizing my condition and that is hurtful.  Only you can really understand the frustration and depression that comes with this. Any advice for coping would be greatly appreciated. Thank you. 

Firstly, I would check that you are in fact eating totally gluten free and that you are not being contaminated by utensils and kitchen equipment etc. (e.g. Do you have your own toaster for toasting only gluten free bread? Are you washing down your work surfaces twice, before preparing your gluten free food etc.). Keep a food diary just in case, that way you can refer back to it.

Just to let you know I had withdrawal symptoms for 6 weeks, it peaked about once a week, and after I ate my main meal of the day, it would come back about half and hour to an hour later. So on day 7, I would suggest that it's very early days. Once you know you have definitely taken out all gluten and gluten risks (i.e. Cross-contamination,  from your diet), it will settle down.  In the meantime, go easy on yourself and drink plenty of water each day, as it will flush toxins out of your body quicker (yes, gluten is toxic if you have celiac disease). Don't be tempted to eat gluten products, as in the long run you will cause yourself serious harm and run the risks of  anaemia, other auto-immune diseases, malnutrition, osteoporosis  and even cancer, so it is not worth the risk.  If there's anything else we can help you with, please ask, there's usually someone on here that has some helpful advice. 

[Kathouse]

Easterlily,

I can relate! Diagnosed Celiac 2/24/17 with a horrible endoscopy/colonoscopy! I was 50% awake and it was tramatic. I am 6+ weeks gluten free and am having some withdrawl symptoms too, as well as major anxiety depression. Be sure to communicate to the GI doc and your family Doc. My psych doc increased my Zoloft....which in turn does causes some diarrhea. One of my docs ruled out menopause, cause I am having female symptoms along with the crying episodes.  I am going to take vitamins for sure and resume my probiotic, which I get at GNC. I have not given up labeled gluten free oats yet...I love oatmeal.  And I have NOT gone extreme in the kitchen like buying my own toaster, using my own utensils etc. I wonder if that is necessary. I would think the dishwasher sanitizes the utensils. I guess if my numbers don't go down then I will have to re-evaluate this whole separate kitchen thing.  My biggest issue right now is my depression. I am literally sad everyday, unable to enjoy much, haven't worked out in 2 months. My husband has been understanding to a point,, but now has become mean to me when I talk to him about how I'm feeling and things that bother me. So, I have decided to seek intensive counseling and deal with myself first. Then deal with him. It's to the point where if he doesn't get better at being empathetic and supportive, then I question why we're married and that is a whole big thing. 

Anyway, you are not alone. I wanted to share this with you so you know that. This is a great place for support and getting questions answered. I wish you the best. Hang in there and take care of YOU!!

Kat

[EasterLily]

Thank you everyone. I knew I'd get excellent advice. I guess the depression is getting the better of me and my craving for bread is getting to me also.  Cutting out foods that I love is difficult, but I know necessary.  I guess I will have to be more vigilant in the kitchen.

[EasterLily]

12 minutes ago, Kathouse said:

Easterlily,

I can relate! Diagnosed Celiac 2/24/17 with a horrible endoscopy/colonoscopy! I was 50% awake and it was tramatic. I am 6+ weeks gluten free and am having some withdrawl symptoms too, as well as major anxiety depression. Be sure to communicate to the GI doc and your family Doc. My psych doc increased my Zoloft....which in turn does causes some diarrhea. One of my docs ruled out menopause, cause I am having female symptoms along with the crying episodes.  I am going to take vitamins for sure and resume my probiotic, which I get at GNC. I have not given up labeled gluten free oats yet...I love oatmeal.  And I have NOT gone extreme in the kitchen like buying my own toaster, using my own utensils etc. I wonder if that is necessary. I would think the dishwasher sanitizes the utensils. I guess if my numbers don't go down then I will have to re-evaluate this whole separate kitchen thing.  My biggest issue right now is my depression. I am literally sad everyday, unable to enjoy much, haven't worked out in 2 months. My husband has been understanding to a point,, but now has become mean to me when I talk to him about how I'm feeling and things that bother me. So, I have decided to seek intensive counseling and deal with myself first. Then deal with him. It's to the point where if he doesn't get better at being empathetic and supportive, then I question why we're married and that is a whole big thing. 

Anyway, you are not alone. I wanted to share this with you so you know that. This is a great place for support and getting questions answered. I wish you the best. Hang in there and take care of YOU!!

Kat

Kathouse- I'm sorry to hear of your struggles.  I have been depressed and anxiety disorder my whole life so I am already medicated and being treated for those, so that is a big help when dealing with the depression and anxiety from the withdrawal.  I am very sorry you don't feel your husband is being supportive. So far my husband has been very supportive and for the most part is even going gluten-free with me.  He still eats food with gluten in it but  has no qualms when I make gluten-free dinners.  He eats it right along with me and doesn't complain.  I have been in counseling since the death of my mother  8  years ago, so I feel I have a firm foundation for getting through this.  I'm sure you will only benefit from counseling.  I wish you the best with that.

[Ennis-TX]

8 minutes ago, Kathouse said:

Easterlily,

I can relate! Diagnosed Celiac 2/24/17 with a horrible endoscopy/colonoscopy! I was 50% awake and it was tramatic. I am 6+ weeks gluten free and am having some withdrawl symptoms too, as well as major anxiety depression. Be sure to communicate to the GI doc and your family Doc. My psych doc increased my Zoloft....which in turn does causes some diarrhea. One of my docs ruled out menopause, cause I am having female symptoms along with the crying episodes.  I am going to take vitamins for sure and resume my probiotic, which I get at GNC. I have not given up labeled gluten free oats yet...I love oatmeal.  And I have NOT gone extreme in the kitchen like buying my own toaster, using my own utensils etc. I wonder if that is necessary. I would think the dishwasher sanitizes the utensils. I guess if my numbers don't go down then I will have to re-evaluate this whole separate kitchen thing.  My biggest issue right now is my depression. I am literally sad everyday, unable to enjoy much, haven't worked out in 2 months. My husband has been understanding to a point,, but now has become mean to me when I talk to him about how I'm feeling and things that bother me. So, I have decided to seek intensive counseling and deal with myself first. Then deal with him. It's to the point where if he doesn't get better at being empathetic and supportive, then I question why we're married and that is a whole big thing. 

Anyway, you are not alone. I wanted to share this with you so you know that. This is a great place for support and getting questions answered. I wish you the best. Hang in there and take care of YOU!!

Kat

I loved oatmeal too and was in denial I had reactions to oats for awhile til someone pointed it out and convinced me. I recently found I can make a fake oatmeal and porridge, there are many ways to do this from a rice gruel like the one I list in the cooking section to using miracle rice and their recipe for a low carb version. You can also make a cream of wheat like sub with konjac flour and a nut based milk coconut flour, almond butter, and serves great with jam.  I blend 1-1 1/2 cup almond milk 1 tbsp coconut flour, 2 tbsp almond butter, 1/2tsp konjac flour and a bit of a extract (todays was vegan cream cheese extract) or SF maple. Sometimes I add cinnamon, Then I zap it in the microwave for a min then pour into a pot and stir constantly til it thickens up over medium heat. Sometimes  I have to add more milk to thin it out and then add a sweetener or a few tbsp of a jam (Todays was Sugar free blueberry preserves) Reminds me of the different cream of wheat I used to have as a kid and super filling while being low carb. I had it with a side of 4 scrambled egg whites and nutritional yeast parmesan.

Yes getting your own toaster, utensils, etc is a must to prevent CC issues in the kitchen you will have MUCH worse issues with on and off mid way withdrawal symptoms. I might suggest using what I mentioned earlier making your own safe zone while fixing foods with your dedicated gluten-free cookware and utensils. Like using the freezer paper on the counter gloves when fixing stuff, plastic utensils. And beware of shared condiment jars and glutened knobs and handles in the kitchen.

We have all had our family traumas and dealing with loved ones with these issues. Mine was really rough with my family due to them causing gluten issues by accident alot. I posted a mental trauma thread . It got really really bad as gluten causes brain and nerve issues with me. I was going crazy from my brain and body not doing what I want which scared me to death and made me really paranoid (Scariest thing is your own body turning against you).

[notme]

consider just one crumb can make your body attack itself - for much longer than the offending crumb is actually in your body, because it causes all sorts of inflammation.  so, yeah, get yourself some new condiments and mark them (i use the skull & crossbones - because if you gluten me i will kill you lolz) so that they are yours only!  it's very likely that cc is keeping you from feeling better.  until you remove all of it from your diet, you will stay in that vicious cycle.  so, of course, it's affecting your mood, this disease is systemic - it affects every part of your body - depriving you of good vitamins and minerals that your body uses for self-soothing and mood alteration (and nerves and anxiety, etc)  personally, when i get glutened, it takes 14 days to get myself back to 'normal' - then it feels like the fog lifts and everybody doesn't look like a punching bag any more lolz

i was constantly glutening myself in the beginning because i couldn't stop licking my fingers!  i know, gross, but i'd be making lunch for kids and test the temperature of (chinese food comes to mind as memorable haha) and then lick my fingers - MISTAKE! - didn't even realize i did it until i had to run for the bathroom.  so i started using those disposable plastic food service gloves whenever i made food for a while until i could break myself of the habit.  evidently i won't lick plastic??  lolz

if you are using hand sanitizer, you are not cleaning gluten off your hands, you're just making it sanitized.  wash your hands with soap and water whoever said they don't need a new toaster, you can use toaster bags, or when i'm traveling, i use other peoples ovens with tinfoil (top rack!  unless it's covered)  i would def get a new colander (o, who am i kidding - i used my dx to get alllllll new kitchen stuff ha ha ha - silver lining !  or should i say stainless steel lining ?   ) 

you have some good suggestions from people who have been on the journey you are on - i am sitting here remembering my meltdown at the grocery store the first time i went after dx - it was not pretty!  and i left without buying anything haha.  if you are still having symptoms, try keeping a food journal.  it's easy to forget what you've eaten if you get a delayed reaction which is the case with many of us (mine is usually 24-48 hours after ingesting the poison)  i would skip eating out for the time being until you get a handle on what is safe and what to run away screaming from

( sorry - this is turning into a book )  looking forward, be patient and when you get clear for a while, your immune system will run like a champ!!  everybody got the pukey flu recently and guess who's got two thumbs and didn't get it?  (it's me   )  i am never sick anymore and i am surrounded by germ-flinging kids.  my husband even got bedridden by this one and i didn't have so much as a sniffle.  so, take heart!  you're gonna be so good at this!   so healthy you won't even know how to act yeah, and tell your kids:  this might be your future as it is genetic.  joke's on them

welcome to the forum

[EasterLily]

3 hours ago, notme! said:

consider just one crumb can make your body attack itself - for much longer than the offending crumb is actually in your body, because it causes all sorts of inflammation.  so, yeah, get yourself some new condiments and mark them (i use the skull & crossbones - because if you gluten me i will kill you lolz) so that they are yours only!  it's very likely that cc is keeping you from feeling better.  until you remove all of it from your diet, you will stay in that vicious cycle.  so, of course, it's affecting your mood, this disease is systemic - it affects every part of your body - depriving you of good vitamins and minerals that your body uses for self-soothing and mood alteration (and nerves and anxiety, etc)  personally, when i get glutened, it takes 14 days to get myself back to 'normal' - then it feels like the fog lifts and everybody doesn't look like a punching bag any more lolz

i was constantly glutening myself in the beginning because i couldn't stop licking my fingers!  i know, gross, but i'd be making lunch for kids and test the temperature of (chinese food comes to mind as memorable haha) and then lick my fingers - MISTAKE! - didn't even realize i did it until i had to run for the bathroom.  so i started using those disposable plastic food service gloves whenever i made food for a while until i could break myself of the habit.  evidently i won't lick plastic??  lolz

if you are using hand sanitizer, you are not cleaning gluten off your hands, you're just making it sanitized.  wash your hands with soap and water whoever said they don't need a new toaster, you can use toaster bags, or when i'm traveling, i use other peoples ovens with tinfoil (top rack!  unless it's covered)  i would def get a new colander (o, who am i kidding - i used my dx to get alllllll new kitchen stuff ha ha ha - silver lining !  or should i say stainless steel lining ?   ) 

you have some good suggestions from people who have been on the journey you are on - i am sitting here remembering my meltdown at the grocery store the first time i went after dx - it was not pretty!  and i left without buying anything haha.  if you are still having symptoms, try keeping a food journal.  it's easy to forget what you've eaten if you get a delayed reaction which is the case with many of us (mine is usually 24-48 hours after ingesting the poison)  i would skip eating out for the time being until you get a handle on what is safe and what to run away screaming from

( sorry - this is turning into a book )  looking forward, be patient and when you get clear for a while, your immune system will run like a champ!!  everybody got the pukey flu recently and guess who's got two thumbs and didn't get it?  (it's me   )  i am never sick anymore and i am surrounded by germ-flinging kids.  my husband even got bedridden by this one and i didn't have so much as a sniffle.  so, take heart!  you're gonna be so good at this!   so healthy you won't even know how to act yeah, and tell your kids:  this might be your future as it is genetic.  joke's on them

welcome to the forum

Thank you so much. I, AGAIN, was feeling better this morning until lunch. From then on my nausea intensified. I am so bloated it actually hurts. I can't deal with anyone right now because I'm so irritable. I bite hubby's head off TWICE tonight.  I will apologize profusely in the morning.  I have not felt this nauseous in about a week .  I have no idea where I went wrong. I actually was in a good mood this morning but now I'm back to being depressed, anxious and irritable.  I don't know how much longer I can handle this nausea . 

[Kathouse]

Easterlily,,

I'm glad your hubby is supportive, mine is too in that way ;He has even gone shopping with me for gluten-free stuff and will try it with me. Here in Michigan we have Aldi's and so far they have the best prices on bread and some other things. I am now starting to make my own gluten-free protein bars. I made an awesome baked chicken I found on Pinterest using gluten-free Panko crumbs, hidden valley ranch seasoning pack (it does say it's gluten-free) and butter.

He's doesn't do well when I'm depressive/negative, napping all the time, especially when I bring up facts and/or nag about his family and things that need to be done. I lost my mother too in 2007 to cancer and it was horrific. I have been to counseling many times and I feel like all I do is tell my story and the therapists don't do anything to help. With that said, I am currently seeking out a good therapist to help me through all this crap. My psych doc said celiac disease and mental illness go hand in hand. Great.

We will make it through all this. Thank God for this support group!

hugs

[Kathouse]

On 4/6/2017 at 9:15 AM, Ennis_TX said:

I loved oatmeal too and was in denial I had reactions to oats for awhile til someone pointed it out and convinced me. I recently found I can make a fake oatmeal and porridge, there are many ways to do this from a rice gruel like the one I list in the cooking section to using miracle rice and their recipe for a low carb version. You can also make a cream of wheat like sub with konjac flour and a nut based milk coconut flour, almond butter, and serves great with jam.  I blend 1-1 1/2 cup almond milk 1 tbsp coconut flour, 2 tbsp almond butter, 1/2tsp konjac flour and a bit of a extract (todays was vegan cream cheese extract) or SF maple. Sometimes I add cinnamon, Then I zap it in the microwave for a min then pour into a pot and stir constantly til it thickens up over medium heat. Sometimes  I have to add more milk to thin it out and then add a sweetener or a few tbsp of a jam (Todays was Sugar free blueberry preserves) Reminds me of the different cream of wheat I used to have as a kid and super filling while being low carb. I had it with a side of 4 scrambled egg whites and nutritional yeast parmesan.

Yes getting your own toaster, utensils, etc is a must to prevent CC issues in the kitchen you will have MUCH worse issues with on and off mid way withdrawal symptoms. I might suggest using what I mentioned earlier making your own safe zone while fixing foods with your dedicated gluten-free cookware and utensils. Like using the freezer paper on the counter gloves when fixing stuff, plastic utensils. And beware of shared condiment jars and glutened knobs and handles in the kitchen.

We have all had our family traumas and dealing with loved ones with these issues. Mine was really rough with my family due to them causing gluten issues by accident alot. I posted a mental trauma thread . It got really really bad as gluten causes brain and nerve issues with me. I was going crazy from my brain and body not doing what I want which scared me to death and made me really paranoid (Scariest thing is your own body turning against you).

 

Ennis_Texas,

Thanks for your reply! I will take your advice and start my own prep area and maybe even toaster bags, I have a dedicated gluten-free drawer in the pantry already. I went out to Fridays for lunch yesterday and got a really good gluten-free chicken entree....but....somewhere there had to be either gluten or I was allergic to something. I felt my throat close a little and post nasal drip in the back of my throat. I took a benadryl which helped. The other problem I'm having is random body itches. I can't pinpoint any of it yet. I don't have exzema, dryness, fleas or lice.  I use a quality salon shampoo product and mild soap. It could be the time of year and allergies.

 

I wonder if you know if celiac is tied to Rosacea? I started having complexion problems in 2014 and was diagnosed with it. It's ugly and I hate it

Cheers, Kat

[cyclinglady]

10 minutes ago, Kathouse said:

 

Ennis_Texas,

Thanks for your reply! I will take your advice and start my own prep area and maybe even toaster bags, I have a dedicated gluten-free drawer in the pantry already. I went out to Fridays for lunch yesterday and got a really good gluten-free chicken entree....but....somewhere there had to be either gluten or I was allergic to something. I felt my throat close a little and post nasal drip in the back of my throat. I took a benadryl which helped. The other problem I'm having is random body itches. I can't pinpoint any of it yet. I don't have exzema, dryness, fleas or lice.  I use a quality salon shampoo product and mild soap. It could be the time of year and allergies.

 

I wonder if you know if celiac is tied to Rosacea? I started having complexion problems in 2014 and was diagnosed with it. It's ugly and I hate it

Cheers, Kat

I will chime in.  Rosacea can and does resolve on a gluten free diet.  Mine is long gone!  There is some reaseach that links it to autoimmune issues.  

Toaster bags.  We use these  when we travel or hang at the family lake house.  So handy and they keep us safe.  

[Ennis-TX]

22 minutes ago, Kathouse said:

 

Ennis_Texas,

Thanks for your reply! I will take your advice and start my own prep area and maybe even toaster bags, I have a dedicated gluten-free drawer in the pantry already. I went out to Fridays for lunch yesterday and got a really good gluten-free chicken entree....but....somewhere there had to be either gluten or I was allergic to something. I felt my throat close a little and post nasal drip in the back of my throat. I took a benadryl which helped. The other problem I'm having is random body itches. I can't pinpoint any of it yet. I don't have exzema, dryness, fleas or lice.  I use a quality salon shampoo product and mild soap. It could be the time of year and allergies.

 

I wonder if you know if celiac is tied to Rosacea? I started having complexion problems in 2014 and was diagnosed with it. It's ugly and I hate it

Cheers, Kat

There is DH and a few other skin issues associated with celiacs and gluten poisoning. That meal you got at TGI was probably glutened we suggest not eating out at all for a the first few months to clear up. Double check your shampoo. it might contain wheat protein, or a wheat based ingreidnet many of them do to infuse into hair especially the high end ones. While most say it does not matter with a shampoo, I myself have really long hair and brush it to the side all the times with my hand, or get a bit in my mouth, etc. and would poison myself back 3-4 years ago when I used to use a shampoo unknowingly with wheat in it.

Since you can eat meats I will tell you fix your chicken in your own house SOOO many crockpot recipes for chicken just get a crock pot liner for easy clean up. And check ALL ingredients but many stews etc can be done this way I used to make a lovely cream of chicken and ginger soup using coconut milk, Thai kitchen curry paste, chopped onion, garlic, coconut secret teriyaki sauce, and ginger. with chicken breast slow cook it all for a few hours shred the chicken add some spinach and wilt it in and serve (should I post this somewhere?) .......GOD I MISS EATING MEAT. ...anyway baked chicken, broiled chicken, fried in coconut oil chicken (use chipolte, ranch, or nacho flavored beanitos, or tortilla chips pulsed in a food processsor for a seasoned breading also makes great cheese sticks) , or grilled. Salmon is a love I still have and eat sometimes love doing a baked salmon with a peach pecan amaretto glaze slowly baked and served over a bed of spinach and toasted pecans and a side of steamed veggies steamed in a bag with liquid smoke for that lovely smoky flavor then tossed in infused coconut vinegar and some spices.......god my inner chef is on a roll. Can I cook for you?

[cyclinglady]

Eating out is like playing Russian Roulette.  Unless, you are at a 100% gluten free restaurant, then skip eating out until symptoms have improved.  A gluten free menu does not mean that it is safe for celiacs!  Sad, but true.  

 

[Gemini]

On 4/6/2017 at 8:52 AM, Kathouse said:

Easterlily,

I can relate! Diagnosed Celiac 2/24/17 with a horrible endoscopy/colonoscopy! I was 50% awake and it was tramatic. I am 6+ weeks gluten free and am having some withdrawl symptoms too, as well as major anxiety depression. Be sure to communicate to the GI doc and your family Doc. My psych doc increased my Zoloft....which in turn does causes some diarrhea. One of my docs ruled out menopause, cause I am having female symptoms along with the crying episodes.  I am going to take vitamins for sure and resume my probiotic, which I get at GNC. I have not given up labeled gluten free oats yet...I love oatmeal.  And I have NOT gone extreme in the kitchen like buying my own toaster, using my own utensils etc. I wonder if that is necessary. I would think the dishwasher sanitizes the utensils. I guess if my numbers don't go down then I will have to re-evaluate this whole separate kitchen thing.  My biggest issue right now is my depression. I am literally sad everyday, unable to enjoy much, haven't worked out in 2 months. My husband has been understanding to a point,, but now has become mean to me when I talk to him about how I'm feeling and things that bother me. So, I have decided to seek intensive counseling and deal with myself first. Then deal with him. It's to the point where if he doesn't get better at being empathetic and supportive, then I question why we're married and that is a whole big thing. 

Anyway, you are not alone. I wanted to share this with you so you know that. This is a great place for support and getting questions answered. I wish you the best. Hang in there and take care of YOU!!

Kat

Kat........the Zoloft is not going to help you much at this point because you are not absorbing correctly. It's a crap shoot with meds in the beginning because you don't know how much of it is getting into your system. I have thyroid disease and I was all over the map with my thyroid in the beginning. Then, after some time has passed, you will have to be careful about dosing because once you start to absorb things better, you can become over-medicated.  I went seriously hyper-thyroid after 4 years gluten free when I was absorbing much better so had to re-learn what dose I needed to take.  It's a bit of a roller coaster ride in the beginning and then when you heal and absorb things well.  Are you sure Zoloft is gluten free?  You mentioned it can cause diarrhea so make sure to check ingredients.

As far as worrying about utensils, here's the basic rule of thumb......wooden spoons/utensils and scratched, old plastic stuff has to go.  Buy yourself some nice new ones and use metal if you have a shared kitchen.  Metal (preferably stainless) does not have to be dedicated because it is not porous and can be cleaned well. As others have mentioned.....you have to have your own toaster or you will be sick.  You do not need to have separate plates or silverware.  The dishwasher will clean them thoroughly but rinse them well before loading if you have a shared kitchen. Ditto for pots and pans...stainless can be shared, cast iron must be dedicated and get rid of any scratched or old Teflon pans and buy new ones, if you like using non-stick.

I love oatmeal too and funny as this sounds, I did not give it up. Found really clean, gluten-free oats that agreed with me. That surprised me because my gut was totally trashed at diagnosis. I was used to eating high fiber foods anyway and sometimes its the fiber and not the oats that get people in the beginning. But if you have bloating and GI symptoms after eating them or on a regular basis, you should avoid them for at least 3 months. At some point, you will get those back.

I am happy you are seeking a counselor to unload on if your husband is not being supportive enough. That can be very tough. Hopefully, he will improve because you are going to heal and you are going to feel well again.  As hard as that seems right now, it will happen. Then that nasty depression will go away, I promise!  Hang in there....brighter days are ahead!

[Kathouse]

On 4/7/2017 at 9:55 AM, Ennis_TX said:

There is DH and a few other skin issues associated with celiacs and gluten poisoning. That meal you got at TGI was probably glutened we suggest not eating out at all for a the first few months to clear up. Double check your shampoo. it might contain wheat protein, or a wheat based ingreidnet many of them do to infuse into hair especially the high end ones. While most say it does not matter with a shampoo, I myself have really long hair and brush it to the side all the times with my hand, or get a bit in my mouth, etc. and would poison myself back 3-4 years ago when I used to use a shampoo unknowingly with wheat in it.

Since you can eat meats I will tell you fix your chicken in your own house SOOO many crockpot recipes for chicken just get a crock pot liner for easy clean up. And check ALL ingredients but many stews etc can be done this way I used to make a lovely cream of chicken and ginger soup using coconut milk, Thai kitchen curry paste, chopped onion, garlic, coconut secret teriyaki sauce, and ginger. with chicken breast slow cook it all for a few hours shred the chicken add some spinach and wilt it in and serve (should I post this somewhere?) .......GOD I MISS EATING MEAT. ...anyway baked chicken, broiled chicken, fried in coconut oil chicken (use chipolte, ranch, or nacho flavored beanitos, or tortilla chips pulsed in a food processsor for a seasoned breading also makes great cheese sticks) , or grilled. Salmon is a love I still have and eat sometimes love doing a baked salmon with a peach pecan amaretto glaze slowly baked and served over a bed of spinach and toasted pecans and a side of steamed veggies steamed in a bag with liquid smoke for that lovely smoky flavor then tossed in infused coconut vinegar and some spices.......god my inner chef is on a roll. Can I cook for you?

Wow! Sounds like you are a good cook and a foodie. I hope you posted those recipes somewhere. I do cook almost daily, but am what I consider a "basic" cook. I have to follow recipes.  Now is a good time to eat since it's Passover, lol. I went to a Jewish Seder potluck last night and had LOTS of gluten-free food to choose from, even a flourless chocolate dessert. They LOVED my veggie quinua salad

Now I need to investigate my shampoo!! ugh.

[Kathouse]

On 4/12/2017 at 0:24 PM, Gemini said:

Kat........the Zoloft is not going to help you much at this point because you are not absorbing correctly. It's a crap shoot with meds in the beginning because you don't know how much of it is getting into your system. I have thyroid disease and I was all over the map with my thyroid in the beginning. Then, after some time has passed, you will have to be careful about dosing because once you start to absorb things better, you can become over-medicated.  I went seriously hyper-thyroid after 4 years gluten free when I was absorbing much better so had to re-learn what dose I needed to take.  It's a bit of a roller coaster ride in the beginning and then when you heal and absorb things well.  Are you sure Zoloft is gluten free?  You mentioned it can cause diarrhea so make sure to check ingredients.

As far as worrying about utensils, here's the basic rule of thumb......wooden spoons/utensils and scratched, old plastic stuff has to go.  Buy yourself some nice new ones and use metal if you have a shared kitchen.  Metal (preferably stainless) does not have to be dedicated because it is not porous and can be cleaned well. As others have mentioned.....you have to have your own toaster or you will be sick.  You do not need to have separate plates or silverware.  The dishwasher will clean them thoroughly but rinse them well before loading if you have a shared kitchen. Ditto for pots and pans...stainless can be shared, cast iron must be dedicated and get rid of any scratched or old Teflon pans and buy new ones, if you like using non-stick.

I love oatmeal too and funny as this sounds, I did not give it up. Found really clean, gluten-free oats that agreed with me. That surprised me because my gut was totally trashed at diagnosis. I was used to eating high fiber foods anyway and sometimes its the fiber and not the oats that get people in the beginning. But if you have bloating and GI symptoms after eating them or on a regular basis, you should avoid them for at least 3 months. At some point, you will get those back.

I am happy you are seeking a counselor to unload on if your husband is not being supportive enough. That can be very tough. Hopefully, he will improve because you are going to heal and you are going to feel well again.  As hard as that seems right now, it will happen. Then that nasty depression will go away, I promise!  Hang in there....brighter days are ahead!

Thank you for your input Gemini! This kitchen will get some new stuff! Thankful that I have good allclad pots & pans.  

So far Red Mill gluten-free oats work for me. I really still don't feel well in general. Achy all the time now. I will definitely give this healing process more time. I have follow-up appts scheduled with both the GI doc and my pcp. I actually cut way back on the Zoloft because it seemed to be making me more anxious; could be the absorbtion issue like you said. I truly wish I didn't have to be on psychiatric meds but I have such a bad anxiety disorder that I HAVE to.  Anxiety sucks. Maybe it's been from gluten all along!