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I Am Sick. Undiagnosed. Confused. Concerned.


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#1 asickdaddy

 
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Posted 28 June 2012 - 11:35 PM

I have had some mild nausea my whole life, randomly. As a kid I had anxiety and was actually diagnosed with ADD but it was really just mild anxiety. My anxiety was from a fear of vomiting in public, I gag really easily and felt sick often( in class, the bus, etc.). I also had chronic constipation. I also would wake up in the middle of the night with chills and feeling very nauseated and sometimes I woke up choking(I was told sleep apnea). I however thrived and did well. Went to college had fun. Lived a normal life.

But I was still plagued with stomach issues. Doctors eventually quit the ADD nonsense as I never fit the criteria. Instead it was diagnosed as anxiety. Every issue was anxiety. This led to anxiety medicine that honestly made me a zombie and caused me horrible side effects. I am still on a low dose.

2 years ago things became worse. I started with a burning stomach pain. This in addition to the other symptoms that I had my entire life, although as an adult they have been to my recollection a milder form(functional).

This pain progressed and I was hospitalized. They thought ulcer. They did an endoscopy and found nothing. However did absolutely zero biopsies. My blood tests were normal. Catscans normal. Ultrasound normal. I even did a full stress test, normal. I really loved the numbing cocktail drink as it really did sooth my stomach. I was given acid reducers that did nothing.

Sent home with "IBS".

My doctor was kind and agreed to the idea of celiac. I did the diet and did have some improvements although it was not miraculous or immediate. He then had me start eating it again. He tested my blood multiple times now and I have been absolutely negative everytime.

He is at a loss. I have been the emergency room at least 6 times in the last 2 years. Usually sent home with opiates.

The pain comes and goes. I decided to quit caffeine along with the gluten and things seemed to get better. For a short while.

Then the pain increased tremendously. For a day. Then left. This cycle repeats. I got really frustrated because it has been hard to eat gluten free, especially without a clear answer and still feeling ill. The last 2 years has been tough on my family and 3 children. I cannot participate like I want to. And noone understands the gluten free diet. Everyone tries to be nice but acts very much like I am a big giant fraud and they constantly make things that are full of gluten with no options for me. They do not understand it, they believe it to be some exotic diet.

So I gave in a few weeks ago and started eating. I admit I craved it. I admit I am bored of the foods I eat. I admit I was eating for pleasure. I started with a pizza. I got so nauseated, but the food was good. Then over the next few days I ate hamburgers and hotdogs and just went with it. I felt fine a few days. In fact I felt amazing a few days.

Then I started at night to feel like I was swaying and dizzy.
Then the stomach pains increased.
Then I felt cramped.
I then realized that I hadn't gone to the bathroom for a while. But I had no desire. Constipated.
Finally had a #2 moment and it was extreme agony. I was impacted to the point of bleeding. (2 days in a row).
Started to feel heartburn and coughing from a burning in my throat.
Anxiety increase and insomnia. ( I slept great weeks before).
Nausea often.
Aching joints. Usually in my left arm and wrist and i did break my wrist in that arm as a kid.
Mild headaches(had been headache free for a good month prior but have been plagued with headaches in the past)
My skin has these little sores all over that will not heal. They honestly look like skin cancer but my doctor claims they are not cancer but possibly fungus? They do not heal. They look like pimples that scab and repeat. I have about 10 of them on my arms and shoulders.
I look grey and just ill.

So, last night I decided it was time to get back on the diet. So I went to have one last dinner. I ate a hamburger and my throat was burning and I felt a panic while eating as I started coughing and it seriously felt a few times like I could not breath and that I was starting to feel like my throat was closing up. So I stopped eating. Drove home and took a benadryl.
It cleared up.

But today I went gluten free and I just don't feel well. I woke up with diarrhea and I never have diarrhea, I actually did not make it to the bathroom in time it was so bad(sorry). In fact this is one of the reasons my doctor did not feel it was celiac as I have not had weight loss(I am 10lbs overweigh) and I have had constipation my whole life(or IBS haha).

I feel so depressed today and anxious and dizzy and I just don't feel well at all. My stomach hurts and I am just so sad about this.

My problem is simple, no diagnosis. I no longer have healthcare. I am embarrassed and ashamed. My family needs me but I just want to hide. I spent over a year on the gluten free diet and did not feel like I improved completely as my stomach pain continued. Yes most of my symptoms improved but it is so hard to stay on the diet especially when you are being told you are basically just an anxious person and worried too much and that food is not an issue.

I am not looking forward to abstaining. I am also not looking forward to the next few days as the withdrawal I had when giving up gluten was near hell. When I gave up gluten I felt blood sugar spikes, headaches, panic, warm spots all over my body, jaw pain, vision strangeness, I would get pins and needles and limbs falling asleep, waking up with a sensation like I bit my tongue(tongue pain), depressed and I am a very upbeat person.

This is not easy. Any advice. Sorry for the story, greatly appreciate it.

I have been through practically every test imaginable including tests for parkinsons, ms, etc. I have had multiple MRI's, nerve tests, tons of stuff. But apparently I am healthy. Just anxious. Damn.
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#2 ravenwoodglass

 
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Posted 29 June 2012 - 02:47 AM

Hopefully your withdrawl won't be as bad this time. The fact that you went through withdrawl before when you went gluten free is very telling as far as your need to be gluten free goes. I hope you have an easier time this go around. It sounds like with myself your body is giving you the answer that the tests have not.
Drink lots of water and eat as much whole unprocessed food as you can. If you can avoid dairy and soy at first that would be a good idea.
I hope you are feeling better soon and that your family is more supportive since they have seen the awful reaction you had when you began eating gluten again.
  • 1
Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 MitziG

 
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Posted 29 June 2012 - 02:55 AM

Well, your doctor screwed up big time by having you try the diet, then testing you. If you were gluten free for even a few weeks, you would need to return to eating gluten, heavily, for a minimum of 3-4 months to even hope to have positive blood tests. This isn't unusual, few doctors no much about celiac, or how to test for it.

Also, weight GAIN with celiac, along with constipation, is very common.

So, what to do now?

Well, you don't have health insurance, so it seems further testing is out of reach for you. You know gluten makes you feel ill. I would suggest you return to a gluten-free diet and step it up a notch.

You stated that you weren't getting total relief of symptoms, and likely that is because you were being cross contaminated with gluten. In a shared household, you at MINIMUM need your own toaster, cutting board, condiments and separate storage space for your utensils. Any cookware that isn't stainless steel will hold gluten. Silverware draweers will usually be full of crumbs. If you are cooking for your family with gluten, you must be hyper-vigilant. The tiniest crumb will affect you. Wheat based flour or baking mixes will hang in the air for hours and cover everything- you honestly can't have them in your kitchen, or use them at all. Your toothpaste, medications and beauty products need to be gluten free. Many contain wheat protein. If you were simply "eating gluten free" you are only going to get minimal relief, unless you had only a mild intolerance. What you have described sounds very much like celiac, and with celiac, there simply isn't an "acceptable" level of exposure generally.

So...how do you do this with a household that thinks you are being a hypochondriac?

You take charge of your health Mom. It is time. Your family can choose to accept it or not, but you need to be firm. When you flip flop back and forth on the diet, they won't take you seriously. Even if you don't,m they may not. And that is part of what a support group is for. People who DO understand and who WILL take you seriously. While some of us are blessed with understanding friends and family, many of us are not, and some have those who actively oppose it, and set them up to fail. Which is a shame. The people who love you should want you to be well.

You can do this. And your diet doesn't have to be boring. You can make anything deliciously gluten free, albeit spending more time and money. But you can also make delicious, inexpensive, naturally gluten free meals. Having celiac taught me how to cook, and now when friends and family come to stay, they don't complain about the lack of gluten anymore, they rave about what a great cook I am! All these years, I was being held back by gluteny convenience foods- frozen lasagnas, frozen pizzas, frozen chicken strips...there is a whole world of food that isn't a shade of "golden brown"!

Yes, we all miss the convenience of just being able to eat without thought. But we DON'T miss having to run for the bathroom, or spend social events IN the bathroom. I don't miss the bone numbing fatigue, or the itchy sores all over my legs, or the million canker sores I used to get! You CAN feel better, I promise!
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#4 squirmingitch

 
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Posted 29 June 2012 - 04:31 AM

Welcome to the board sickdaddy!

And perhaps you can print out some excerpts from this thread as well as other threads you read & let your family read them; perhaps it will help them to understand & take this seriously.
  • 0

Self diagnosed dh Sept. 2011~~~ confirmed dx July 18, 2012
Gluten free Dec. 2011
Soy free Dec. 2011
Hubs self diagnosed dh March 30, 2012
Hubs gluten free March 30, 2012

Summer 2013 We both have added back a little soy which is near unavoidable & we are doing okay with that small amount.

 


#5 Razzle Dazzle Brazell

 
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Posted 29 June 2012 - 04:34 AM

I have had some mild nausea my whole life, randomly. As a kid I had anxiety and was actually diagnosed with ADD but it was really just mild anxiety. My anxiety was from a fear of vomiting in public, I gag really easily and felt sick often( in class, the bus, etc.). I also had chronic constipation. I also would wake up in the middle of the night with chills and feeling very nauseated and sometimes I woke up choking(I was told sleep apnea). I however thrived and did well. Went to college had fun. Lived a normal life.

But I was still plagued with stomach issues. Doctors eventually quit the ADD nonsense as I never fit the criteria. Instead it was diagnosed as anxiety. Every issue was anxiety. This led to anxiety medicine that honestly made me a zombie and caused me horrible side effects. I am still on a low dose.

2 years ago things became worse. I started with a burning stomach pain. This in addition to the other symptoms that I had my entire life, although as an adult they have been to my recollection a milder form(functional).

This pain progressed and I was hospitalized. They thought ulcer. They did an endoscopy and found nothing. However did absolutely zero biopsies. My blood tests were normal. Catscans normal. Ultrasound normal. I even did a full stress test, normal. I really loved the numbing cocktail drink as it really did sooth my stomach. I was given acid reducers that did nothing.

Sent home with "IBS".

My doctor was kind and agreed to the idea of celiac. I did the diet and did have some improvements although it was not miraculous or immediate. He then had me start eating it again. He tested my blood multiple times now and I have been absolutely negative everytime.

He is at a loss. I have been the emergency room at least 6 times in the last 2 years. Usually sent home with opiates.

The pain comes and goes. I decided to quit caffeine along with the gluten and things seemed to get better. For a short while.

Then the pain increased tremendously. For a day. Then left. This cycle repeats. I got really frustrated because it has been hard to eat gluten free, especially without a clear answer and still feeling ill. The last 2 years has been tough on my family and 3 children. I cannot participate like I want to. And noone understands the gluten free diet. Everyone tries to be nice but acts very much like I am a big giant fraud and they constantly make things that are full of gluten with no options for me. They do not understand it, they believe it to be some exotic diet.

So I gave in a few weeks ago and started eating. I admit I craved it. I admit I am bored of the foods I eat. I admit I was eating for pleasure. I started with a pizza. I got so nauseated, but the food was good. Then over the next few days I ate hamburgers and hotdogs and just went with it. I felt fine a few days. In fact I felt amazing a few days.

Then I started at night to feel like I was swaying and dizzy.
Then the stomach pains increased.
Then I felt cramped.
I then realized that I hadn't gone to the bathroom for a while. But I had no desire. Constipated.
Finally had a #2 moment and it was extreme agony. I was impacted to the point of bleeding. (2 days in a row).
Started to feel heartburn and coughing from a burning in my throat.
Anxiety increase and insomnia. ( I slept great weeks before).
Nausea often.
Aching joints. Usually in my left arm and wrist and i did break my wrist in that arm as a kid.
Mild headaches(had been headache free for a good month prior but have been plagued with headaches in the past)
My skin has these little sores all over that will not heal. They honestly look like skin cancer but my doctor claims they are not cancer but possibly fungus? They do not heal. They look like pimples that scab and repeat. I have about 10 of them on my arms and shoulders.
I look grey and just ill.

So, last night I decided it was time to get back on the diet. So I went to have one last dinner. I ate a hamburger and my throat was burning and I felt a panic while eating as I started coughing and it seriously felt a few times like I could not breath and that I was starting to feel like my throat was closing up. So I stopped eating. Drove home and took a benadryl.
It cleared up.

But today I went gluten free and I just don't feel well. I woke up with diarrhea and I never have diarrhea, I actually did not make it to the bathroom in time it was so bad(sorry). In fact this is one of the reasons my doctor did not feel it was celiac as I have not had weight loss(I am 10lbs overweigh) and I have had constipation my whole life(or IBS haha).

I feel so depressed today and anxious and dizzy and I just don't feel well at all. My stomach hurts and I am just so sad about this.

My problem is simple, no diagnosis. I no longer have healthcare. I am embarrassed and ashamed. My family needs me but I just want to hide. I spent over a year on the gluten free diet and did not feel like I improved completely as my stomach pain continued. Yes most of my symptoms improved but it is so hard to stay on the diet especially when you are being told you are basically just an anxious person and worried too much and that food is not an issue.

I am not looking forward to abstaining. I am also not looking forward to the next few days as the withdrawal I had when giving up gluten was near hell. When I gave up gluten I felt blood sugar spikes, headaches, panic, warm spots all over my body, jaw pain, vision strangeness, I would get pins and needles and limbs falling asleep, waking up with a sensation like I bit my tongue(tongue pain), depressed and I am a very upbeat person.

This is not easy. Any advice. Sorry for the story, greatly appreciate it.

I have been through practically every test imaginable including tests for parkinsons, ms, etc. I have had multiple MRI's, nerve tests, tons of stuff. But apparently I am healthy. Just anxious. Damn.


I just wanted to add in addition to cross contamination risk, the risk to having more food sensitivities and Intolerances are common. It would be a good idea to keep a food diary to help you keep track and figure out what else could be bothering you. Good Luck.
  • 0
Gluten and Oat Free 6/'12
Dairy, Corn and Yeast free 7/'12
Nightshade Free, Candida diet & low salicylates 8/'12
Nightshades and carbs and sugars limitedly reintroduced, most salicylates now tolerated 9/'12
No longer Reacting to yeasty breads 10/'12
Test confirmed yeast overgrowth, back on Candida diet 11/'12

You only get one life so make it count.

#6 tom

 
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Posted 29 June 2012 - 05:41 AM

Well, your doctor screwed up big time by having you try the diet, then testing you. If you were gluten free for even a few weeks, you would need to return to eating gluten, heavily, for a minimum of 3-4 months to even hope to have positive blood tests.
...

Great post MitziG but isn't "to even hope" an exaggeration?
Certainly some celiacs might not be dx'd in less than 3 months, but just as certainly, it's not ALL celiacs.

The latest study I saw also recommended that "low moderate" dosage qty be used in future studies, in addition to reducing the 12wk challenge used for that study.

http://www.biomedcen...471-230X/11/129
  • -1
>>>>>>> tom <<<<<<<

Celiac 1st diagnosed as a toddler, in the 60s. Docs then, between bloodletting & leech-tending, said "he'll grow out of it" & I was back on gluten & mostly fine for 30yrs.

Gluten-free since 12-03
Dairy-free since 10-04
Soy-free since 5-07

#7 Bubba's Mom

 
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Posted 29 June 2012 - 12:12 PM

Your symptoms would sure suggest you're Celiac or at least gluten intolerant?

A food log is a really good idea. Note what you eat and list any symptoms you may have. Many food sensitivities can have a delayed reaction. Having that log helps you connect the dots. Many of us find we do best omitting dairy for a while, and soy is another big irritant.

If you aren't taking probiotics..start them at once! Your symptoms could also fit with a small intestine bacteria overgrowth (SIBO).

Become a grill master. Make delicious grilled meats, veggies, even pineapple is good on the grill. You can roast corn, and make foil packets with cut up potatoes and onions drizzled with olive oil and a bit of salt/pepper or garlic or Rosemary. Easy prep and easy clean up.
You'll be in charge of the food you eat, and will know it's gluten-free.

Try to eat mainly fruits, veggies, nuts/seeds, unprocessed meats. Skip the gluten-free versions of junk food..but you can have potato chips, fritos, popped corn, etc. Take control of your diet and get on the path to wellness. Be a self advocate..let the nay-sayers blabber on. Just don't give in to them.
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#8 MitziG

 
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Posted 29 June 2012 - 09:03 PM

In response to Tom: not really exaggerating in the sense that I was thinking the vast majority of those who have an issue with gluten will STILL test negative for celiac. Roughly 30% of celiacs will get a false negative, + there are those who are gluten intolerant who won't show up either. So, while the study you meentioned does indicate smaller quantities could be ingested, again, the majority opinion is still the equivalent of 4 slices of bread a day, for 3 to 4 months...and then maybe you will be one of the lucky % whose blood tests present an accurate picture. My point was, even following protocol, false negatives are still far too commmon with serological testing.
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#9 nvsmom

 
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Posted 30 June 2012 - 03:33 PM

My problem is simple, no diagnosis. I no longer have healthcare...

...I have been through practically every test imaginable including tests for parkinsons, ms, etc. I have had multiple MRI's, nerve tests, tons of stuff. But apparently I am healthy. Just anxious. Damn.


Perhaps you could try one of the home blood test kits now? I tried the Biocard test and had a faint positive which was confirmed two weeks later by my doctor's tests. it's over 90% specific, meaning if you get a positive then you have over a 9/10 chance it's celiac rather than something else. It's highly unlikely that you could get a false positive although it's possible to to get a false negative.

Biocard tests for abnormal tTg which are the antibodies that that kick off the intestinal damage... as \i understand it.

I normally eat pretty gluten lite, but i "glutened" more for 2 weeks prior to the test. I you go that route, you might want to consider continuing with gluten until you get the test, or don't quit too far in advance of getting it. I don't know if you'd want to continue though.

I got the test on sale for $50 cdn.

When you had your painful #2, it could have been a hemiherrhoid (sp?). Once one of those things get squished or ripped, they can bleed for over a week; especially if you have ongoing constipation.

Best wishes to you. you've had a rough go.

Nicole
  • 0
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"Acceptance is the key to happiness."

ITP - 1993
Celiac - June, 2012
Hypothyroid - August, 2012

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#10 ~TheFanny~

 
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Posted 06 July 2012 - 10:51 PM

From my exp, I know that when I am on the GFdiet and I cheat, I pay for it major! I had a small cupcake the other day and was so beyond sick! I was also super tired and slept all day on the 4th of July... :(
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[font="Courier New"]~TheFanny~[/font]

#11 GFinDC

 
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Posted 07 July 2012 - 07:53 AM

You don't have to get a doctor's permission to go gluten-free. You don't have to get any tests done. You can just do it and be done with the whole testing and wondering about it thing. Symptoms may not resolve completely in a year. One study showed up to 18 months for some people. But you have to stick with it if you want results. Regardless of what other people think. This is your life,. and your body is not a go to the shop and get spare parts thing. You can do serious, permanent damage to your body by not following the gluten-free diet if you are celiac.
  • 1
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul

#12 eatmeat4good

 
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Posted 07 July 2012 - 07:05 PM

I totally agree with GFinDC.
I think your body and your mind have been screaming for you to get rid of gluten.
I am a DH Celiac.
Dermatitis Herpetiformis.
Your rash and your neurological symptoms can be Celiac.
Forget about the diagnosis.
You need your life back.
People with DH tend to be very sensitive to traces of gluten.
Symptoms can continue without complete elimination of gluten.
That doesn't mean eating it.
That means finding out how to avoid cross contamination especially if you live with gluten eaters which you do.
So that year you were gluten free? Did anyone cook or bake with wheat flour in your home? It tends to become airborne and can make you sick as you breathe and then swallow it. It's true.
The rash can take months to go away even being strictly gluten free.
My main symptoms were the rash, headaches, muscle aches, fatigue and severe and profound anxiety and depression. The kind that makes you wanna hide.
You described it too.
I also was a weight gaining Celiac...I didn't lose weight at all until I went gluten free.
All of your symptoms are consistent with celiac.
Please go to the Dermatitis Herpetiformis section and read about the rash associated with Celiac.
While it is possible to get the rash biopsied and thereby get a diagnosos of Celiac Disease, it is unfortunately true that DH Celiacs often test negative on blood,and both the intestinal and skin biopsy.
However we also tend to be the ones who are at greater risk for the cancers associated with Celiac.

Just decide that your life can't continue as it is. You have been too sick for too long.
You can learn to cook for yourself and keep yourself safe but you will have to pay close attention to the cross contamination issue. I know it is hard when you don't feel good. I wish you had more support in your home. Maybe you can get it by explaining what Celiac is and asking for support. It sounds like you are serious about getting well. Don't pay any attention to those who think you are a hypochondriac or on an exotic diet. You are doing this so you can get your life back and not be a sick daddy anymore.

Hope you do some reading about DH.
Doesn't matter what Dr.'s think, it matters what your body thinks. And your body is telling you loud and clear.
I hope you hang in there with this and I hope you feel better soon.
  • 0
Healing is a matter of time, but it is sometimes also a matter of opportunity.
--Hippocrates

#13 GFinDC

 
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Posted 08 July 2012 - 06:17 AM

Another thing that might help. Celiac can affect your brain. It can stop your gut from absorbing vitamins and minerals your body needs to function correctly.. Also, gluten and casein (milk protein) can act like opiods in the brain. That means they can directly affect your mental state and possibly cause depression, anxiety, anger etc. With celiac we sometimes get leaky gut which can allow those protein into the bloodstream. Not good for us. But if you stay strictly gluten-free your gut can heal and stop that from happening. Although you may need to avoid dairy also. You could ask you doc for a blood workup to check for vitamin deficiencies.
  • 0
Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."
Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.
Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, and hard work. have a good day! :-) Paul




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