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Maybe I'm Just Making This All Up...


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7 replies to this topic

#1 hopeonthemove

 
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Posted 20 April 2012 - 02:18 PM

Hi everyone, my name is Hope.
I'm really struggling with this topic, I have been back and forth on a gluten free diet, and I often end up wondering if I am just convincing myself that there is something wrong with me!

I have never been tested for celiac, I have a suspicion that it would show up negative anyway since my symptoms are not super intense - and I really don't want to pay for an expensive test.

A couple of years ago, I began having intense gastro-related problems, it seemed like I couldn't eat anything without having tons of bloating, cramping, and diarrhea. I did a drastic cleanse, took out all meat, sugar, caffeine, wheat, and processed foods, and I felt better immedeatley. I lost about 15 pounds, felt good, and then slowly I sort of gave in to my cravings and began to snack on desserts and foods with wheat in them. I didn't notice any bad effects! I felt fine after eating a sandwich or bagel. After I kept doing this for a week, I began to feel gross again, the bloating and gas returned, and my stomach felt all crampy and gross (especially when I ate wheat and sugar together in a dessert). I realize after writing this that it sounds pretty obvious that I should stop all those foods again, but it is such a restrictive way to live! I have a real emotional eating thing going, when I get stressed or tired or sad, I tend to head right for the foods that are "forbidden", it's some kind of a "I'm not going to follow your rules" thing I have going in my personality. I know it doesn't make logical sense, but when I'm home alone and feeling down, I have a real dilemma while standing in front of the pantry.

I think to myself:
I'm probably fine eating gluten. Maybe it's lactose or sugar!
I deserve to have this. Other people get to eat this.
I don't want to have to buy special food. I miss the way a real cookie tastes and feels!
Look, I ate a sandwich and didn't get sick. I'm imagining the whole thing.
Ugh, I don't feel well. Maybe I really do have a problem with gluten.

This goes on for a while, and I may give in to the gluten craving or I may not.

I feel stuck right now. Part of me doesn't believe there is anything wrong, and when my family gets skeptical too, it just pushes me in that direction. I'm using my lack of a huge physical response as proof that I'm mostly okay, but past experience has shown me that there probably is something going on with me and gluten. My friend has a very strong reaction, lots of sickness and all, and mine is so much more subdued.

I don't know, I guess I'm just trying to find some inspiration to pick a road and stay on it. Anyone have any ideas?
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#2 ravenwoodglass

 
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Posted 20 April 2012 - 02:52 PM

Welcome to the board. I don't think your just making it up. Are you aware that gluten reactions are often delayed? It can take up to a week for a reaction to happen after you go back on gluten. A few folks will react right away but definately not everyone.
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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 love2travel

 
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Posted 20 April 2012 - 05:00 PM

Believe me, you can have wonderful gluten-free cookies that look and taste exactly like gluten cookies. Cookies are very easy to make gluten free. Not just cookies - most things, actually, so you don't have to feel deprived. I love food more than anyone I know so I understand. Not only that but I eat for every reason out there - when I am tired, when I am happy, to celebrate, out of boredom. But you can have wonderful treats on hand. You do not need to bother buying that icky processed stuff if you do not want to. Many of us don't.

You do not need to have "super intense" symptoms to have celiac. There is such a thing as silent celiac. I am one of those. I had no obvious symptoms and got tested as a family member was diagnosed as gluten intolerant. I was absolutely shocked to find I have it. But the things you describe could definitely be symptoms. There is a huge, vast, wide, cavernous range of them.

Many of us cannot tolerate lactose, especially in the beginning. I could not but after about nine months tried it again and now can eat aged cheese.

If I were you I would either a: get tested before you really are strictly off gluten (you must be consuming it when you get tested) or b: go strictly gluten free for a good month or two. But very strict. If you do indeed have celiac you could be doing some serious damage to your villi which in turn can cause a multitude of other illnesses down the road such as related cancers, diabetes... I would find out either way so you know. You need to treat your body well for it to be well! :)
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<p>Confirmed celiac disease February 2011 from biopsies. Strictly gluten free March 18 2011.Diagnosed with fibromyalgia April 13 2011.3 herniated discs, myofascial pain syndrome, IT band syndrome, 2 rotator cuff injuries - from an accident Dec. 07 - resulting in chronic pain ever since. Degenerative disc disease.Osteoarthritis in back and hips.Chronic insomnia mostly due to chronic pain.Aspartame free May 2011.

When our lives are squeezed by pressure and pain, what comes out is what is inside.

#4 Takala

 
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Posted 20 April 2012 - 07:24 PM

One of the symptoms of being glutened, is the inability to think clearly that eating gluten is creating cravings to eat gluten.

Get tested. If you test positive, you have an auto immune disease, the only one which can be treated by diet. If you test negative, you may still have it and have a false negative testing, (it happens) or you are only gluten intolerant, which your symptoms point to. Either way, you will at some point have to make a decision as to whether or not a temporary sensation of eating something, is worth feeling very sick for the next 48 hours to a week, or do you display enough self control to want to feel differently.
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#5 AVR1962

 
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Posted 20 April 2012 - 10:06 PM

The questions are common, I have thought them all myself......how can the person at the table next to me eat burger buns and I can't? Is this in my head? Why can my husband eat a huge plate of pasta and he has no issues? Am I imagining my own problems? Especially for those who don't have an actual diagnosis, these questions can be even more powerful.

What I know is what journey I have had and can share my own experiences with you. I do not have the gold seal diagnosis with the scope and biopsy of the intestines. I was sick sick sick and no doc could figure out why. I had known something was bothering my stomach for 2 years prior to getting real sick. I thought it was fat, then I thought it was spice and I experimented with no results. Food allergies run in my family. Finally, of all people, one of my adult daughters convinced me to ry a gluten-free diet. She practically begged me. I knew it wasn't my problem but to satisfy my daughter I agreed to 10 days, that's it......and that's all it took for me and I knew.....it was gluten, I was shocked!

I hvae been on a gluten-free diet for a year now an have had a great deal of improvement. I also found out I was having trouble with lactose, gums such as guar and xanthan, high fructose (and to anyone I was warn to stay away from high fructose, it is like poison to the body. I do not know how it is allowed in foods....ketchup, etc. Read on it!)For me though, something was still not right as my body seemed to be on fire from the inside and things were going wrong. I found myself repeatedly sick with something but was not having digestive issues. I then took all grains and refined suagr out of my diet and that was it. I knew my body was not doing well with sugar so I had been limiting it but it wasn't until I took at all grains that I noticed a big big difference in my health.

Docs are not real skilled with all of this, at least not that I have found. I tested for just about everything you can name and my tests kept coming back negative. Don't doubt what your body is trying to tell you. Why are we this way? Who knows! The fact is we are and if we want to improve out health we need to work at it. I see people eating all thes gluten-filled foods and desserts and I see they they are killing themselves. Gluten is not tolerated by something 88% of the population. More studies are showing that corn products are playing a role in our poor health and sugar is huge, bad bad stuff for the body.

I met with a friend yesterday who told me she wanted to lose 20 pounds. She is on this diet where she is to take in so many calories and take HCG drops.....for one that diet is not good if anyone has looked it up. My suggestion to her was to take all grains and suagr out of her diet and eat only lean meats, veggies and nuts. Get back to the basics of a raw foods diet. I think generally speaking people feel better. Now if I can just convince my husband!! ;-)

Annette
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Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#6 Kjas

 
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Posted 21 April 2012 - 06:55 AM

The others have all made great suggestions so far.

I don't feel deprived on this diet, in fact I eat better than anyone I know health wise, with more variety and probably more enjoyment than most people have. And when I feel like pancakes, I make myself pancakes, just healthy ones that taste great (complete with raspberries and a little bit of dark chocolate) :D . It's actually been a blessing in a way, it was the kick in the butt that I needed to go back to eating the way I had been growing up.

I think you have more issues here than just gluten, I think you need to address your food issues (psychological) in general. Take a look around this website, go through the archives, they might help you.

In particular I think the following two might help, so read these two first and see if you have any lightbulb moments:

Lesson One

Lesson Two
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#7 JNBunnie1

 
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Posted 21 April 2012 - 03:54 PM

Basically, you will come to a point every day where you decide whether it's more important to you to be healthy than to eat the food in front of you. I personally became so incredibly ill that I will never consider eating gluten again. I'm 100% non-functional on gluten. So I don't get a choice. But aside from that, I am 95% sure that I got Celiac from my father, who died six years ago from leukemia. For me, even if I didn't get very sick, knowing that he had Celiac symptoms all his life and then died at 52 of leukemia (which untreated Celiac greatly increases your risk of getting) would keep me gluten free. I'm like a little clone of my father. Except I have girl parts!

Watching him die was the hardest thing I've ever dealt with, and I can't help but wish I could go back 20 years and make him go gluten free. So even if I didn't get sick from it, I'd be gluten free. Because I love my family and I wouldn't want to put them, or any children I may have, through that experience with me. That's my mental way of staying gluten free. Maybe you can find something like that in your experience to help motivate you. Because you most certainly do get sick off gluten. No reason to doubt that based on your description!
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If you're going through hell, keep going. ~Winston Churchill

#8 mamaupupup

 
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Posted 21 April 2012 - 05:07 PM

Hi there!
Thinking of you! Quick note since I have to go get kids to bed...I had all four in our family tested. The entire Celiac Panel cost $28 WITHOUT insurance. With insurance I paid $2.80 for each of the four of us. It's been worth every single penny!!!
Thinking of you!
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