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ToriMartin

Please Help, 12 Yrs & Getting Worst. Gluten Intolerant?

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Please read my story!

When I was a baby I couldn't eat my baby foods because they had wheat. Wheat would give me a rash. Well, through the years it seamed to of went away. But, through my childhood I'd feel sick allot & everyone thought I was faking. Then when I was 13 I started getting a rash again. Stayed away from anything that was "Wheat" except bleached wheat. I found that if I eat Wheat Gluten or Wheat Starch & got a terrible stomach pain, throwing up, headache, ect. It was like I'd have the flu for a couple days. So, I've always kept away from it.

In 1999 I was pregnant with my first child. I knew I was pregnant right away because I became so exhausted! I was a very active healthy person at the time. Anyhow, I remember driving down the road thinking "I feel weird"... I felt like I was in a dream. Well, figured it was the pregnancy. It never went away! I gained 70 pounds with my pregnancy! Lost some of it but not enough. I was in an awful marriage which I'm sure didn't help. Anyhow, The "Brain Fog" has been the most difficult to cope with. But, the weight, hair loss, brittle nails, ect was also hard.

Well, in 2003 (had 2 kids by then) I read allot about Willsons Syndrome. I Dr tried me on Armour. It took 9 months but I started feeling alittle better, not 100%. But, I managed to get a divorce! I lost 55 pounds in just 4 months & kept it off until 2009!

Through the years I have tried sooo many different things... Talked to many different Dr's, had lots of tests done. Each Dr looks at me like I'm a Hypochondriac. Yet, it's the only thing I go to a Dr for! Anyhow, some symptoms get better, new symptoms appear, ect. I could probably write a book on my problems...

Anyhow, yes to this day my ex still makes my life hell. But, I am now married to a wonderful man. I had our 4th child (1st together) last September. I actually managed to only gain 25 pounds & lost all but 10 of it. Well, 2 months later they supposedly discontinued my Thyroid Med. So, in about 4 months I gained 30 pounds!

I recently went to the Dr again, she of course pretended to listed & ran tests. Everything is fine. I feel Hypo all the time but I honestly think my thyroid problems are just a result of Gluten Intolerance. I have had the blood test for Celiac which was negative. But I recently found out about Gluten Intolerance.

Anyhow, yes I am depressed but it's because I feel like everything is a dream. I haven't actually felt live in 12 years! I try to be happy, but I'm miserable. I have goals & I work hard! Actually I feel like that White Rabbit in Alice in Wonderland! I'm always in a hurry! But I stress because I really am sooo tired. I just want to lay in bed all day. But I cant because I want so much out of life! I have 4 kids & a Farm. I keep very busy!

This has taken a terrible toll on my relationship with my family. Sometimes I feel like a bullet would be easier... Yet I want to live. I want to feel alive!

Anyhow, awhile back I started getting IBS. Stools have always floated for me which it's hard to believe thats un-absorbed nutrients & fat when I can't get the weight off! Anyhow, the IBS was getting worst. I go through phases where I give up & except the hand that is delt. Then I go through phases where I do everything I can to find my cure!

A few weeks ago I took Gluten, Dairy & Sugar out of my diet. After 4 or 5 days I eat some cheese on corn chips... IBS the next day... So, I went back to no dairy... I then eat Jerky not realizing it had Gluten in it... IBS the next day... BREAKTHROUGH! I feel like I'm finally getting somewhere!

By the way, I've been taking Apple Cider Vinager for months... I'm trying to take more vitamins also. I'm taking a bunch of them! Vitamin D3, Omega 3, Multiple, Vitamin C, a variety of others.

Anyhow, I eat Avacado the other day & got terrible sinus pressure than a head ache & felt awful! I eat it again the next day & sinus pressure again & mild headache! Avacado? Really?

Anyhow, I'm still soooo tired... Still foggy... Still depressed, ect. The IBS is better but I do have loose stools sometimes.

My Hormones are out of whack though! Whats really weird is that sometimes I feel like I have fetal movement but not pregnant... Gas?

I've had awful Insomnia lately also! I lay there wise awake. I'm eating allot of carbs from Corn & Meat. I try not to eat much fruit. I don't really know what else to eat. It doesn't help much when I don't feel hungry, nothing sounds good, My stomach feels sick allot...

Anyhow, what do I need to do? How do I overcome this?

I'm sure I could write more but I think I've taken up enough of your time...

I really just need help. I need to feel better... 12 years of this is just to long...

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First off, take a big breath, sit down and relax! Okay?? Yes, it is possible to be gluten intolerant and test negative for celiac disease. It sounds like you have been gluten intolerant all your life. So the first thing you must do is make sure that you have removed ALL the gluten from your life. This includes things like not sharing peanut butter or tubs of spread with your family, not sharing a toaster with them, storing all your gluten free foods separate from theirs, not using the same cookware (especially scratched non-stick and colanders), not baking for them with regular flour. You MUST keep yourself free of gluten. It hides in things like personal care products, prescription and OTC medicines, shampoos and hand lotions, lipsticks. You can get gluten from kissing your husband after he has drunk beer. You can get glutened from touching gluten food and then touching your non-gluten food if you don't wash your hands.

So then, once you have got rid of all the gluten, most people who have damaged their intestines from eating gluten will also be intolerant to lactose found in milk, cream and ice cream especially, but for some all dairy, because it is digested by that part of the small intestine that has been damaged by the gluten, so you have to avoid dairy for a while until that heals.

And then the bummer is that you can also be intolerant of things like...avocados!! You just have to find out what these things are and avoid them for now. Probably after a year or so you will be able to tolerate them again, but right now your gut is in an uproar and probably doesn't feel like tolerating much of anything. So you must be nice and kind to it, give it things that are easy to digest, stay far, far away from all the things it doesn't like, and give it time to calm down.

In the meantime, yes, your thyroid can be totally out of whack because of gluten. You should ask your doctor to test you for nutritional deficiencies because even though you have had weight problems you haven't been absorbing the proper nutrients, only the glucose to keep you from the starvation your body thinks it has been subjected to. Things you are likely to be deficient in are Vitamin D, B12, folate, iron, potassium, zinc, particularly. Just throwing a bunch of supplements at your body is not going to help unless you are addressing the specific deficiencies. With D, particularly, just taking a few OTC pills is not going to help you much.

So, do you think you can do this, because I feel sure it will make you feel whole bunches better. And you are going to have to enlist the support of our family to help you with this.

Good luck, and here are some supportive {{{{{hugs}}}}}


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Tori,

hugs to you - it is so hard.

I'm so sorry you are having such a life-long struggle.

Your story makes me sound like a baby, a rant I just posted.

It does feel good to 'get it out' on the forum here

and hopefully someone can give you some good advice. I've

only been gluten free for 3 months and having more problems

than before my diagnosis! Bodies are miracles that sometimes

go wonky! Hang in there -

Wendi


Diagnosed with Lymphoma March 2010. After surgery doctors said "Oops!"

Diagnosed with Celiac Disease April 2010. After endoscopy doc said "Aren't you glad?"

Uhhh.....yeah!

DD #1 ('99) tested negative on bloodwork but positive on 2 genetic markers. Went gluten free in July 2010 and has been symptom-free ever since!

DD #2 ('98) tested negative and has no symptoms. Didn't fork out money for genetic testing. Will watch and test regularly.

Husband tested positive in July 2010 and has refused to go gluten free. Uh huh, that's gonna bite him in the a** one day! (Pun intended!)

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Hi Tori,

Welcome to the board. I know how you feel. Was in an abusive marriage for 21 years before I managed to get out. I have felt bad since I was abt 8 years old. Been overweight since I was 14. Never could lose more than about 5 lbs at a time. Gained 85 lbs with first pregnancy. I was bad sick the whole time developed preeclampsia and had him 2 months premature then had 7 miscarriages in 5 years after that. Intermittent diareah and constiptation all the time. Has asthma, had sores on the top of my head for over 20 years that wouldn't go away no matter what meds I put on them. Anemic my whole life, no iron pill could fix, always made me sick. Hair falling out, asthma, allergies, fatigue, chronic pain, depression, anxiety. You name it I had it.

Found out I had Fibromyalgia, Rhumatoid arthritis and at least gluten intolerant.

I'm begining to think my fibro and RA might be a misdiagnosis now.

A year and a half ago, went gluten free. It's been a total shock to me what has all gotten better.

Have found out I can't eat most of the gluten free food because I get sick. I am what we call on here super sensitive. There's a thread on here about that. So I can only eat fresh meats, some veggies, because I have several intolerances to some, brown rice and some nuts not all.

I am no longer anemic, no longer have the sores on my head, asthma, depression, anxiety, hair falling out. Fatigue is just in the last month starting to get better, but the best thing of all is I have come down from 205lbs to right now 165 lbs.

I'm telling you this because there is hope. Just start out with fresh foods, try to keep cross contamination to a minimum as much as you can, take out the dairy and soy. You will start to feel better. I promise. Unless you get the dreaded withdrawals, let's hope that dosn't happen. But that will last for a short time. In the beginning you will feel good then a couple of days you'll feel lousy, but hang in there and you will start to have better days.

If you have any questions we will be here to help. I also will suggest to read as many of these threads a s you can. You will learn a lot in a short period of time. It will be like a systen overload but hang in there and you'll get through it. Hope you get to feeling better.

Vicky


Lupus, Connective Tissue Disease with Fibro type symptoms, Anemia, Anxiety, Depression, RA, Rynauds Syndrome, Chronic Fatigue Syndrome, Erosive Gastritis, Osteoporosis, Degenerative Disc Disease, Scoliosis, Bulging discs in lower back and neck, Pinched Nerves.

 

Soy free, MSG free, mostly Dairy free. Endoscopy shows blunted Villi which dr states as gluten sensitivity, so goin back to being gluten free

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Thank You everyone :)

I'm Sorry you are all having to go through this also! I'm glad I'm no longer alone though :)

My husband tries to understand but he never will... It just effects me in so many different ways.

So farm my IBS is gone but there is something that affects me lightly every so often... No idea what it is yet...

Is it normal to be really bloated? I noticed before going gluten free that I've had poor circulation & water retention these days... I am also bloated. Today I noticed I am more so than ever! I almost look pregnant! That can't be though... Is it normal to go gluten free & be so bloated?

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Yes, the bloating and gas is a very normal part of gluten intolerance, for many the primary/only symptom. It should diminish as you heal; if it keeps on it may be a sign of another intolerance, or of things that you are not digesting well. Things like corn, broccoli, apple skins, etc., are hard to digest. Also, your pancreas can take a bit of a holiday and not put out enough digestive enzymes, so an enzyme supplement will often help, taken with meals. And while we are talking about help for the digestive tract, a good gluten/dairy free probiotic will help populate the gut with good flora and aid in digestion.

I hope you are starting to feel better. Hang in there, because you can do this. You just have to stick with it!


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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You guys are great! :)

I'm slowly learning... I need to take the time & sit down to read more... I will...

I'm 99.9% sure Gluten is the cause of all my problems. It's my understanding that because of it I have become "sensitive" to other things... Primarily Milk... But it seems like other things like Avacado... I'm still learning... Correct me if I'm wrong :)

I never noticed how food affected me until I went on just veggies & meat for 5 days. I have noticed right away things not agreeing with me after I eat them. It's frustrating trying to figure out what I can & can't eat... But I'll get there... I'm going to stick to just meat, eggs, veggies & fruit. No more hard candies or anything!

My daughter has high cholesterol & we've all pretty much followed her diet for the last 2 years. So the transition has been easier... We don't eat spaghetti, Pizza, Casseroles, ect. Of course any occasion the kids weren't around we'd go out to pizza or Chinese...

I have noticed daily I eat something I shouldn't... Yesterday it was a strawberry hard candy... I noticed right away... No idea what was in it... But I will no longer make mistakes like that. How long before I notice a difference? The bloating, water retention, poor circulation, Brain Fog, Insomnia, Weight Game & Fatigue are the worst. So far the only things I have noticed is that I bloat after eating something I shouldn't... & get gassy... Slight IBS the next day... If I eat dairy or Gluten I get IBS bad.

I'm still very lost in all of this but I do feel like this is a "Breakthrough" & look twords better health! I can't wait to feel better. I haven't felt good since I was 18, I'm 30 now... I feel like I lost a whole decade. I really want to feel better for my kids. They are getting older, & this "fog" makes everything seem like a blur.

Thanks for listening to me :)

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Hello,

the fog will lift, for about 10 years I have suffered with depression. Not wanting to live at the start of with it. Feeling alone and thinking I was lazy becouse I had no energy. My family thinking that I am no good. I am so glad that it is Coeliac that I have. Now I have changed my diet I am feeling sooo much better. I am a better mum too for my little girl. And I hopefully will change others views towards me. It can only get better. I still look pregnant myself and have bad circulation. But one step at a time.

Good luck with it all x

You are not alone

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I've been working trying to identify foods I can tolorate for about four months. Have been gluten-free for four months but did not get rid of diarrhea until I went off all fruits two months ago. Today I added 1/3 cup of fresh blueberries at lunch--couldn't resist them. Seven hours later--diarrhea. Bummer

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Lori2, you may have an issue with fructose.


Peter

Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000. I was retested five years later and the biopsy was normal. You can beat this disease!

Type 1 (autoimmune) diabetes diagnosed in March 1986

Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator since 2007

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I agree with you, Peter. When I started this, fructose was the first thing I considered (along with gluten for certain family reasons). But was told by a dietitian that my problem definitely wasn't fructose but probably gluten and yeast. EnteroLab testing ruled out yeast--confirmed gluten. Today I decided to test fruit--I flunked the test.

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