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I think I have Celiac


vicwlk

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vicwlk Rookie

I'm not a fan of doctor's so I don't have a PCP so my appointment isn't until Nov 7th because that's the 1st open date for the dr. I want to see because she has only 5 star reviews. I'm strongly believe I'm Celiac and I'm hoping to find advice until I can see the dr. and get tested. 

MY  EXPERIENCE / SYMPTOMS

1. Daily constipation

2. I weigh 128 pounds at 5'7" and even when I competed in fitness competitions at 115lbs my stomach was always bloated

3. Extremely exhausted always and getting worse now because energy drinks and ritalin can no longer keep me awake.

4. dry skin and hair

5. Mucus strings constantly in my eyes and at times i can't work because I'm pulling mucus out of my eyes and rubbing them. twice I've given myself a black eye from rubbing.

6. 2 panic attacks in the past month and bouts of depression in the past year. I've never had them before and have always been even tempered but very ADD and abscent minded. The depression is weird because my life is pretty ok I'm middle class and stable with a daughter who has a supportive father and I've definitely seen worst times in my life without getting depressed. 

7. About 2 years ago I started getting knots in my back that wouldn't go away unless I went #2

8. Had a bad GI infection a year ago and the urgent care doctor gave Tylenol with codeine and laxatives. This has happened a few times since but I'd just take the left over codeine and laxatives

9. Also, I had a miscarriage/birth at 6 months when I was 19, a miscarriage at 2 months at 20 and an 8lb 3 ounce baby when I was 22 (37 now). When I was 8 months I was working at a restaurant eating wings and pasta daily and was told she wouldn't be bigger than 4 lbs. Days later I stopped working only ate home cooked food mostly salad, rice, meat and a veggie and she was 8lbs 3 ounces 4 weeks later

I've had hormone tests done and gyno's love pushing birth control, I hate how it makes me feel so I don't take it. When I decline that, the last PCP suggested anti-depressants and told me to see a psychiatrists and gave me prednisone  for my weeping and itching (NOT KIDDING). I'm not mentally ill I'm sick. 

A month ago i started playing around and going gluten free for a week and then eat gluten the next week. By the end of the 1st week I'd start to feel energized and stimulants would work again. Then I'd eat gluten and think maybe I don't have a gluten allergy because I was fine, until 2 days later it would hit me! The eye mucus, exhaustion and all other symptoms would come at once. 

7 days ago I started taking leftover antibiotics my daughter had from a staph infection (she's a gymnast) on her leg and cut all gluten. I took them twice a day for 4 days and felt like a regular person for the first time in a LOOOOONG TIME! I could tell when the antibiotic would start to wear off because I'd start to feel sick again, so I'd give myself an enema and immediately I was fine. LIKE MAGIC! 

I've been gluten free for 5 days now and I have tons of energy until I eat food. The antibiotics gave me crazy diarrhea so I've been drinking chocolate boost with lactaid (just to make sure it's not a dairy issue) as my meals with a banana, some blueberries and an apple. I'm not looking to lose weight so I have no desire to sustain this but it was very easy on my digestive system. I had heavier food last night and this morning, baked chicken, white rice and black eyed peas for dinner and breakfast (normal breakfast food makes me tired). I woke up with energy and was fine until about noon when I got super bloated, itchy, eye mucus and started crying on the verge of a panic attack. I gave myself an enema and I feel absolutely fine now. I WAS SITTING AT MY DESK (I work from home) CRYING LIKE SOMEONE JUST STOLE MY CHILD! Then I was fine after #2 as if I didn't just have a melt down, FOR NO REASON! 

I'd get gluten from reeses sticks, oatmeal, bread, pancakes, pasta, gumbo and when I'd bake pies around the holidays. I cook daily and freeze a lot of foods and make a lot of foods from scratch with majority of ingredients coming from the veggie, seafood or meat aisle unless it's pasta, beans or oils so going gluten free won't be hard. I clean EVERYTHING even dishes with clorox and I brillo pad scrub my pots and clean them all in the dishwasher after with clorox added because I have pets that I catch licking plates on my counter every now and again so i'm not concerned with cross contamination. I started taking lactaid a month ago to ensure I didn't confuse this with a dairy issue and I'd even take one with my ritalin. 

As a certified internet doctor (joke) all signs point to celiac but I know I can't be sure until the test.

My question is after this long post, when will my body rid itself of gluten? Why did I have an episode today after feeling great the past 2 days? Should I wait until November or should I try and see anyone sooner just to get tested? 

Thanks to anyone that takes the time to read this novel and respond ?

 


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cyclinglady Grand Master
18 hours ago, vicwlk said:

I'm not a fan of doctor's so I don't have a PCP so my appointment isn't until Nov 7th because that's the 1st open date for the dr. I want to see because she has only 5 star reviews. I'm strongly believe I'm Celiac and I'm hoping to find advice until I can see the dr. and get tested. 

MY  EXPERIENCE / SYMPTOMS

1. Daily constipation

2. I weigh 128 pounds at 5'7" and even when I competed in fitness competitions at 115lbs my stomach was always bloated

3. Extremely exhausted always and getting worse now because energy drinks and ritalin can no longer keep me awake.

4. dry skin and hair

5. Mucus strings constantly in my eyes and at times i can't work because I'm pulling mucus out of my eyes and rubbing them. twice I've given myself a black eye from rubbing.

6. 2 panic attacks in the past month and bouts of depression in the past year. I've never had them before and have always been even tempered but very ADD and abscent minded. The depression is weird because my life is pretty ok I'm middle class and stable with a daughter who has a supportive father and I've definitely seen worst times in my life without getting depressed. 

7. About 2 years ago I started getting knots in my back that wouldn't go away unless I went #2

8. Had a bad GI infection a year ago and the urgent care doctor gave Tylenol with codeine and laxatives. This has happened a few times since but I'd just take the left over codeine and laxatives

9. Also, I had a miscarriage/birth at 6 months when I was 19, a miscarriage at 2 months at 20 and an 8lb 3 ounce baby when I was 22 (37 now). When I was 8 months I was working at a restaurant eating wings and pasta daily and was told she wouldn't be bigger than 4 lbs. Days later I stopped working only ate home cooked food mostly salad, rice, meat and a veggie and she was 8lbs 3 ounces 4 weeks later

I've had hormone tests done and gyno's love pushing birth control, I hate how it makes me feel so I don't take it. When I decline that, the last PCP suggested anti-depressants and told me to see a psychiatrists and gave me prednisone  for my weeping and itching (NOT KIDDING). I'm not mentally ill I'm sick. 

A month ago i started playing around and going gluten free for a week and then eat gluten the next week. By the end of the 1st week I'd start to feel energized and stimulants would work again. Then I'd eat gluten and think maybe I don't have a gluten allergy because I was fine, until 2 days later it would hit me! The eye mucus, exhaustion and all other symptoms would come at once. 

7 days ago I started taking leftover antibiotics my daughter had from a staph infection (she's a gymnast) on her leg and cut all gluten. I took them twice a day for 4 days and felt like a regular person for the first time in a LOOOOONG TIME! I could tell when the antibiotic would start to wear off because I'd start to feel sick again, so I'd give myself an enema and immediately I was fine. LIKE MAGIC! 

I've been gluten free for 5 days now and I have tons of energy until I eat food. The antibiotics gave me crazy diarrhea so I've been drinking chocolate boost with lactaid (just to make sure it's not a dairy issue) as my meals with a banana, some blueberries and an apple. I'm not looking to lose weight so I have no desire to sustain this but it was very easy on my digestive system. I had heavier food last night and this morning, baked chicken, white rice and black eyed peas for dinner and breakfast (normal breakfast food makes me tired). I woke up with energy and was fine until about noon when I got super bloated, itchy, eye mucus and started crying on the verge of a panic attack. I gave myself an enema and I feel absolutely fine now. I WAS SITTING AT MY DESK (I work from home) CRYING LIKE SOMEONE JUST STOLE MY CHILD! Then I was fine after #2 as if I didn't just have a melt down, FOR NO REASON! 

I'd get gluten from reeses sticks, oatmeal, bread, pancakes, pasta, gumbo and when I'd bake pies around the holidays. I cook daily and freeze a lot of foods and make a lot of foods from scratch with majority of ingredients coming from the veggie, seafood or meat aisle unless it's pasta, beans or oils so going gluten free won't be hard. I clean EVERYTHING even dishes with clorox and I brillo pad scrub my pots and clean them all in the dishwasher after with clorox added because I have pets that I catch licking plates on my counter every now and again so i'm not concerned with cross contamination. I started taking lactaid a month ago to ensure I didn't confuse this with a dairy issue and I'd even take one with my ritalin. 

As a certified internet doctor (joke) all signs point to celiac but I know I can't be sure until the test.

My question is after this long post, when will my body rid itself of gluten? Why did I have an episode today after feeling great the past 2 days? Should I wait until November or should I try and see anyone sooner just to get tested? 

Thanks to anyone that takes the time to read this novel and respond ?

 

If you plan on getting tested for celiac disease, you must be consuming gluten daily for about 6 to 8 weeks.   All celiac testing requires you to be on a full gluten diet or the tests will be invalid.  

Trying to guess if you have celiac disease based on symptoms alone is not possible.  Why?  Because many illnesses or other autoimmune disorders often have overlapping symptoms.  Some celiacs are symptom free!  

Consider reading  up on celiac disease which is an autoimmune disorder and not an allergy.  If a celiac consumes gluten, it can trigger a self-attacking flare up that can last weeks or months, long after the actual gluten leaves your body.  

I wish you well.  

vicwlk Rookie
2 hours ago, cyclinglady said:

If you plan on getting tested for celiac disease, you must be consuming gluten daily for about 6 to 8 weeks.   All celiac testing requires you to be on a full gluten diet or the tests will be invalid.  

Trying to guess if you have celiac disease based on symptoms alone is not possible.  Why?  Because many illnesses or other autoimmune disorders often have overlapping symptoms.  Some celiacs are symptom free!  

Consider reading  up on celiac disease which is an autoimmune disorder and not an allergy.  If a celiac consumes gluten, it can trigger a self-attacking flare up that can last weeks or months, long after the actual gluten leaves your body.  

I wish you well.  

Thanks for responding. I've read a lot and have had a full hormone panel done including all thyroid tests and the doctors keep trying to put me on birth control and / or anti depressants. I have to self diagnose and tell the doctors what to test because they keep trying to tell me I'm crazy and give me drugs I don't need. I'm waiting until Novemeber because this particular doctor is well respected and it's her 1st opening. I'm sure it could be other things and I'm guessing it could also be a gastro issue but I only have issues when I eat gluten. 

cyclinglady Grand Master

Great!  Just start eating gluten daily before your November appointment in order to get an accurate test result.  Just a slice or two of bread daily (or equivalent).  

Ennis-TX Grand Master

Messed up part, doctors like to push drugs and ignore the celiac issue because they can not sell you drugs to fix it. Celiac only has one treatment and that is a gluten free diet.

Keep eating gluten at least a slice of bread or two a day to keep your antibodies up so testing will be valid. Try eating it at night before going to bed so you can try to operate to some extent during the day.

To help with the constipation try Natural Vitality Calm, those with celiac have issues with magnesium absorption issues and this causes severe constipation. The Calm is a Magnesium Citrate and in large doses is a laxative, use a scale to dose the stuff can be crazy. Start with 2 grams a day and every day up the dose another 2 grams til you get loose stools then back it down 2 grams. -_- 12-18g should have you blowing like a box of exlax dose a normal human.

I had the constipation issues at first also...sort of miss them lol, I get the normal D now .....FOR OVER 6 weeks from just a crumb.
Dry Skin and Hair is a combo issues of nutrient absorption issues and fat absorption both issues of damaged intestines.
The Energy is a comb issue also of lack of B-vitamins, Magnesium, other nutrients, and your body always fighting a war inside you, also why your more prone to infections as your army is all worn out and always fighting (immune system).


PS Bleach does not kill gluten, it is a protein like blood, you need 500F+ to destroy it. There is a whole decon phase of cleaning everything out, and then you have to have dedicated cookware, cutting boards, colanders, condiment jars, etc. But you can read up on that after diagnosis in the newbie 101 section.

vicwlk Rookie
On 9/21/2018 at 1:39 PM, cyclinglady said:

Great!  Just start eating gluten daily before your November appointment in order to get an accurate test result.  Just a slice or two of bread daily (or equivalent).  

no, i was at a work event yesterday and had plain potatoes, string beans and chicken with gravy. I asked if the chicken had flour in it and I was told no. An hour later during a 4 hour drive to NJ my eyes started leaking mucus and it gets so bad i have to pull over because it blocks my vision. I was itching, tired, mucus in my throat and I got a headache and of course bloated. I called the hotel and asked to speak to the chef and yes there was flour in the gravy. It's getting so bad it's effecting my job so there's no way I can have a piece of bread every day or I won't have a job or be a good parent because it really drags me down.

 

vicwlk Rookie
On 9/21/2018 at 2:20 PM, Ennis_TX said:

Messed up part, doctors like to push drugs and ignore the celiac issue because they can not sell you drugs to fix it. Celiac only has one treatment and that is a gluten free diet.

Keep eating gluten at least a slice of bread or two a day to keep your antibodies up so testing will be valid. Try eating it at night before going to bed so you can try to operate to some extent during the day.

To help with the constipation try Natural Vitality Calm, those with celiac have issues with magnesium absorption issues and this causes severe constipation. The Calm is a Magnesium Citrate and in large doses is a laxative, use a scale to dose the stuff can be crazy. Start with 2 grams a day and every day up the dose another 2 grams til you get loose stools then back it down 2 grams. -_- 12-18g should have you blowing like a box of exlax dose a normal human.

I had the constipation issues at first also...sort of miss them lol, I get the normal D now .....FOR OVER 6 weeks from just a crumb.
Dry Skin and Hair is a combo issues of nutrient absorption issues and fat absorption both issues of damaged intestines.
The Energy is a comb issue also of lack of B-vitamins, Magnesium, other nutrients, and your body always fighting a war inside you, also why your more prone to infections as your army is all worn out and always fighting (immune system).


PS Bleach does not kill gluten, it is a protein like blood, you need 500F+ to destroy it. There is a whole decon phase of cleaning everything out, and then you have to have dedicated cookware, cutting boards, colanders, condiment jars, etc. But you can read up on that after diagnosis in the newbie 101 section.

good to know! I have really good pots so i can blast them in the oven. I've been taking magnesium at night with iron for a few months now but the only thing that gets me going is Senna Tea. I can't eat bread though because it renders me useless and today I'm working on a full can of NOS and 25mg of ritalin at 6am, green tea and 25mg of ritalin at noon and 25mg of ritalin at 4pm just to be able to barely function only because I accidentally had gravy yesterday. For the past 2 days I was fine with no stimulants until I had that gravy. Thankfully I'm in NJ for work and I found this delicious Puerto Rican restaurant that makes everything fresh, no flour (spoke to the owner) and nothing comes out of a bag other than spices and none of the spices have gluten as others have asked him, then a guy sitting at his bar over heard us and said I'm celiac and I come here almost everyday with no issue. He wasn't trying to be gluten free but after our chat yesterday he's going to start advertising to bring more business in. I love going local for food anyway but the food at work conventions oddly are filled with crap that just puts me to sleep lol so I'm learning to travel with ensure and lactaid if i'm stuck in an convention and to google Puerto Rican or Indian restaurants for gluten free, good healthy meals. 


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cyclinglady Grand Master
22 hours ago, vicwlk said:

good to know! I have really good pots so i can blast them in the oven. 

Only pots like cast iron need to be placed in a very hot oven  (think cleaning cycle) as they are porous and can retain gluten.  If your pots are stainless and are not deeply scratched, a good scrubbing will insure that all gluten is removed. I would not put my stainless in very hot oven!  

Ennis-TX Grand Master

Stainless in a oven.....make sure they are rated for first, second do know they will probably turn purple/bluish in graidents. Looks cool but might not be your thing.

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