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Turning Point


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7 replies to this topic

#1 KristenS

 
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Posted 07 May 2013 - 08:05 AM

Its been 5.5 months since diagnosis, and on a gluten-free diet. It has been a rocky journey. Pre-diagnosis my only symptom was iron deficiency. After giving up gluten I developed stiff joints, severe weight gain, red blotchy skin, acne, crazy food cravings, headaches, and very severe reactions to being glutened (projectile vomiting for 6+ hours). All this while coming to terms with giving up a food group that i loved, and a huge lifestyle change for a young woman living in a big city. Needless to say I have been miserable. I dont even think miserable is an approptiate word to derscribe it. I was furious at my doctor, covinced I would have been better off never being diagnosed, and generally very mad at the world.

 

However, I think I've reached a turning point. I have been able to move my hands and actually hold a toothbrush when I get up in the morning, my insatiable hunger has disipated, my weight seems to be decreasing, and my anxiety seems to be lifting.

 

I know there are a lot of you struggling, and I just want to give you hope that it will get better. It may not be something that you can see day to day, and man can it get worse before it gets better, but things will improve. Its not like taking a pill and having feeling better in a few hours, but it is working. Slowly, but it is. This is by far the hardest journey of my life thus far, but I think I can see the sun shining through the clouds.

 

 

 


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31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections


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#2 notme!

 
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Posted 07 May 2013 - 09:20 AM

good for you, honey!  it *is* hard so the sweeter the accomplishment :)  and very encouraging to those who are struggling  - it pays to hang in there.  it really does get better (and easier) :)  great news!


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arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

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#3 alesusy

 
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Posted 07 May 2013 - 09:56 AM

Thank you, Kristen

It's very good news for you and it's so encouraging for everybody else. Personally it's just what I need to hear today!


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#4 Gemini

 
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Posted 07 May 2013 - 10:36 AM

Good for you, Kristen!  Trust me.....I have been strictly gluten-free for 8 years now and it gets better and better as time goes on.  You will ultimately forget you ever ate that thing called gluten.

Living in a big city?  It ought to be easier for you to find good food to eat.  Cities offer many more options.  Your anger will subside completely once you really start to recover and you'll realize how lucky you were to be diagnosed.  I had severe iron deficiency for years and it nearly did me in as I got older so please believe me when I tell you finding the root cause is the best thing to happen.  This is much better than intestinal cancer from years of being undiagnosed....no one wants to go down that road.

 

Good luck and continued better health.....it took me 3 years to rid myself of all symptoms but it can be done!  You will get there.  :)


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#5 cyclinglady

 
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Posted 07 May 2013 - 04:14 PM

Kristen, 

 

Thanks for your words of inspiration.

 

Like you,  I only had Iron deficiency when I went for a colon "well-check".  I had been diagnosed some 15 years earlier with Hashimoto's Thyroiditis and that has been acting up for the past year (swinging hyper to hypo).   I never would have guessed celiac disease!  My husband has been gluten-free for  12 years, so I knew the diet.  I had other food allergies so I was little down about giving up gluten.  So, I had six weeks until I could get scoped and I ate bread like a fiend!  I'm talking a loaf a day!  By the end of the six weeks I started getting intestinal issues.  My blood test stated that I has a mild reaction to celiac disease.  By the time I was scoped, the lab results show moderate to severe damage!  

 

I'm five weeks into being gluten-free.  I'm feeling a little stronger so I think the anemia is improving.  But I'm still having intestinal issues.  I've taken to writing down a food/symptom journal to see if I've developed any other allergies (allergic to eggs, milk proteins, garlic, mushrooms and some nuts).  

 

From your posting, I see that I just need to be patient and persevere.  

 

Thanks!


  • 0
Non-functioning Gall bladder Removal Surgery 2005
Diagnosed via Blood Test and Endoscopy: March 2013
Hashimoto's Thyroiditis -- Stable 2014
Anemia -- Resolved
Fractures (vertebrae): June 2013
Osteopenia/osteoporosis -- June 2013
Allergies and Food Intolerances
Diabetes -- January 2014




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#6 1desperateladysaved

 
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Posted 07 May 2013 - 05:32 PM

Oh, Wow, what you have been through!  I am glad you can see some light.  I hope it continues getting brighter for you!  I feel like making you an I survived T shirt, but perhaps I will leave that for someone else.

 

Meanwhile, keep up the good work and get better soon.  ***


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#7 1of6

 
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Posted 08 May 2013 - 05:55 PM

Kristen, I too feel like the black cloud around me is starting to lift.  I've been gluten free since mid November and my day does not revolve around food anymore.  I am so glad that you are feeling better as well!  We got this!  On step in front of the other and in no time we will be posting on here and helping all the newbies out. 


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#8 KristenS

 
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Posted 08 May 2013 - 07:05 PM

Thank you all for your kind words! I couldnt have imagined going through all this alone, and without the community. We are all a shoulder to cry on, and a hand to life eachother up. I dont know how many times I came searching to find out if I was alone in a symptom or problem!

 

Gemini: The options for gluten-free food (especially gluten-free bakerys at local farmers markets) is great, but the culture of not having a car, buying everything close by, and going out for a lot of meals and social functions is hard. When I live three doors down from a french bakery that I used to buy fresh baguettes at daily, it gets a bit tiresome smelling the ovens baking from your backyard. The culture of eating work lunches out almost every day, and going to restaurants and bars weekly with friends has been the hardest part. The feeling of being left out was one of the things that saddended me the most. But its high time I get over my self pity party, and embrace this shit! ;) I think I was making it harder on myself, and I need to get out of that path of self destruction. Last weekend I decided I wanted to eat and drink with my friends, so we had a big Cinco De Mayo party at our house and enjoyed traditional tacos, grilled corn, marguritas, and had a blast. Did anyone notice that everything they ate was gluten free? Of course not, and I certanly didnt hear any complaints!

Now to figure out how to get back into that bikini before summer...


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31 years old

Diagnosis: Severe Malnutrition due to Celiac - November 2012 via biopsy.
Severely iron deficient for 3+ years before diagnosis. No GI Symptoms. Two negative blood tests before biopsy.
IV iron infusions & monthly B12 injections





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