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A Celiac's 10 Month Progress Report

Celiac.com 12/04/2009 - It’s been ten months since my diagnosis of celiac disease.  The foggy thinking is clearing.  I remember more and more details of the misery of living a life with gluten poisoning.  Can you imagine having leg cramps so severe that when they finally subsided your legs were bruised?  That was by far the worst pain I have ever experienced. And I would have those cramps four or five times a week. I was prescribed quinine and it didn’t help a bit, however I did not contract malaria.  People would say to me, “You just need to eat bananas.  You have a potassium deficiency.”  They didn’t know I ate bananas everyday to no avail.  The dull pains in my gut I had learned to ignore even though they were constant.  The leg cramps that would come in the middle of the night I could not ignore.

Other symptoms included extreme fatigue, lightheadedness, vision loss, anemia, and heart papaltations. Throw in depression, panic attacks, and a feeling of impending doom. My blood work was always a frightening revelation.  It even scared my doctor and he’s not even me!  You know it’s bad when the doctor is reading your lab results and both of his eyebrows arch up to the middle of his forehead.  I also had vertigo and balance problems.  The weight loss was extreme.  Gluten had robbed me of nutrients necessary to live a normal life.  I was suffering from malnutrition, although I ate constantly.  Life wasn’t really working out like I had hoped.

Can you blame me when I say I really hate gluten?  I hate gluten as much as I hate Adolph Hitler.  It is insidious. All of that pain was caused by that little protein called gluten.  It almost killed me.  I won’t ever consciously eat gluten again no matter what drugs are developed to neutralize it.  I feel like the classic jilted lover when it comes to gluten.  I wouldn’t take gluten back for any amount of money.  I would take the drugs only to insure myself in case of accidental ingestion when eating out at a restaurant or something to that effect.   When I am at the grocery store I will not even walk down the bread aisle.  I hate the smell of fresh bread.   I really believe everyone would be better off if they went gluten free.  However, it’s not going to happen. 

The best thing about celiac disease is that once you eliminate gluten from your diet you start getting better in a hurry. What an exciting journey these past ten months have been!  I have gained 58 pounds.  I feel so strong that sometimes when I walk down the street I hope someone will take a swing at me! Unless he’s a professional fighter I don’t think he’ll knock me to the pavement on the first swing. Maybe I exaggerate a bit, but what I am trying to say is that I have a feeling of well-being that I never knew possible.  I feel so good I want to shout out to the neighborhood, “I FEEL GOOD!” (cue the James Brown song here) “I KNEW THAT I WOULD NOW!” 

What is exciting is that some of the research is very optimistic.  I recommend reading some of Dr. Ron Hoggan’s articles on the cutting edge discoveries that could possibly neutralize the toxic effects of gluten in celiacs.  Larazotide Acetate could be the miracle drug celiacs and other autoimmune sufferers are hoping for. I think you will be hearing a lot more about breakthroughs in the near future.  I am so grateful for Dr. Hoggan, Scott Adams, Dr. Peter Green, the research team at the University of Maryland, Dr. Alessio Fasano and many others who are lending their brilliance to this puzzling malady.  I marvel at the depth of their knowledge and passion for discovery.  Unfortunately, I am not so gifted.  I can only thank them and reap the benefits of their work.

Reading Recommendations:

  • If you aren’t already familiar with The Journal of Gluten Sensitivity you can subscribe through a link here at Celiac.com. You will find much information and you will be encouraged at the current work being done in this field. 
  • I highly recommend the following books for the newly diagnosed celiac:
    -Celiac Disease and Living Gluten-Free – Jules E. Dowler Shepard (a great personal story honestly told by a smart author, and lots of recipes)
    -Celiac Disease a Hidden Epidemic – Peter Green. M.D. and Rory Jones (lots of science and answers to your questions here)
    -The G Free Diet – A Gluten Free Survival Guide – Elisabeth Hasselbeck (another honest personal testimony and lots of graphs, charts, and recipes)
    All of the above have done much research and have exhaustive indexes. Well worth the investment.

Celiac.com welcomes your comments below (registration is NOT required).



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7 Responses:

 
Dolorres Eilers
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said this on
08 Dec 2009 6:52:16 PM PST
A great article. I found much information that is helpful in shopping.

 
Gene Cahoon
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said this on
09 Dec 2009 8:02:10 AM PST
Been there, did that.

 
Anna Mae Schroeder
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said this on
09 Dec 2009 9:33:06 AM PST
I've had so many of these symptoms, and am so glad that I discovered my gluten problem in 2002. I began to feel better within days and weeks, and notice when I ingest gluten accidentally.

 
Carol Litfin
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said this on
09 Dec 2009 11:00:34 AM PST
Rick: I loved your report. I've been a celiac since 1991 (actually a lot longer because it took so long to get the final diagnosis).
I would recommend "Jules Shepard" and her recipes (which we see on this website often). They are so tasty. She really knows her stuff.

 
ahmed
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said this on
09 Dec 2009 7:06:28 PM PST
Hi All,
I know that everyone of us has his story of suffering. God bless you all. For me I suffered because in my country (Egypt ) doctors are not very good and that's made me suffer more than you can imagine, and the worst thing is I cant find anyone who can understand me and my disease. Around me I see people who suffer too and they don't know why !!

 
Rhonda
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said this on
13 Dec 2009 8:24:02 AM PST
Rick, thank you for your article. Very happy for you! I definitely can relate to all your symptoms. It's been a year since I was diagnosed and recent testing showed my antibodies were negative! The burning, tingling neuropathy in my feet and legs have now stopped. My energy level, and GI symptoms have improved. I too feel gluten is POISON! The sad part of this is, I had to figure it out myself and asked to be tested. I was dumbfounded and angry because of the years of misdiagnoses,
tests and medications I had been given. Only to find out that some of the medications contained gluten!!! After reading Dr. Peter Greene's book. I learned I have had celiac since I was 17 years old. I had developed Dermatitis Herpetaformis. I am now 54 years old. So for 37 years, I have suffered. I have been
diligent about educating myself and my doctors. Even writing letters to past doctors, informing them to get educated about Celiac. Example: I asked my GI doctor how strict do I need to be. He replied, only be concerned with what you ingest. So, I go gluten-free, so I thought. And my antibodies were still high!
Dumbfounded again....reading The G Free Diet by Elizabeth Hasselback. I learned my lipstick was not gluten free. After testing negative, I informed my doctor. Now he was the one dumbfounded! Since I work in the medical field, my personal mission is to increase awareness of celiac. No one should be suffering from something that is so controllable. I am so happy now that I have my life back and feel empowered because I am in control. Bless you all with good health!!! ( It only takes 1/8 of a teaspoon to make you sick)

 
katie berry
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said this on
13 Jan 2010 11:47:12 AM PST
Good for you! It's amazing how quickly our bodies can heal when we take out the poison. My entire family---myself, husband and 2 kids---all have Celiac. I HATE Gluten with a passion!!! But what I hate worse than anything these days.....is HIDDEN GLUTEN! It has gotten us so badly the last couple of years---I am sick to death of gluten hiding in foods due to cross contamination or sloppy production. Our daughter's antibodies were higher this year than they were the first year we tested her eating her full gluten diet!!! It scared us and it scared her. She is still more careful...but we still get hidden gluten.

Five years down our gluten-free road---since July 2005---I am MORE dumbfounded than ever at just HOW HARD eating Gluten Free is. Apparently, we are starting to fall into the category of "Super Sensitive Celiac"---which makes it increasingly hard and frustrating to eat safely.




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