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GF Lover

Member Since 13 May 2012
Offline Last Active Private

#925905 Mast Cell Activation Syndrome (Mcas)

Posted by GF Lover on 31 July 2014 - 11:38 AM

Just think.  The more time that goes by, the more you are healing and your body is constantly adjusting to the ongoing changes.  This is all good stuff.  It took us a long time to get this way...it takes a long time to heal from it.  Remember, each day is a step closer to the goal.


Your not alone hun.  We've been there and will help and encourage you through it.



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#925763 Of Course This Happens...

Posted by GF Lover on 30 July 2014 - 06:22 AM

I know the test should be with active lesions.  The antibodies under the skin have to be sufficient to be reliable.  I don't know about the Iodine.  Still, I wouldn't think one day for a full blown breakout is gonna make it.  How long did it take to make the appt?  Maybe just call and tell them your basically clear except itching and you are having a biopsy specifically for DH and get their opinion.  Maybe they can get you back quicker knowing the situation.  Can't hurt to try.  


Good Luck.



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#924585 Ebay Scams

Posted by GF Lover on 21 July 2014 - 06:25 AM

IMO, You should give ebay the information you have gathered in the Dispute Communication.  Also put concerns about your reputation.  If this is credit fraud, it should be handled properly to avoid future problems with the "buyer" and the other "buyer".  



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#924341 Peanut M&ms

Posted by GF Lover on 18 July 2014 - 07:45 AM

No problem with M & M's here.  Probably just a stomach ache from all the sugar?

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#923649 Waiting For My Test Results

Posted by GF Lover on 12 July 2014 - 04:56 AM

Last summer, it was discovered I had developed an anemia. Initially, my doctor framed the situation in grim terms -- I was a young male with anemia and anemia in young men is rare. I eat a regular diet and had not recently donated or lost any blood. He sent me to a hematologist who works in oncology. The hematologist reviewed my blood work and ordered iron tests. They showed I was severely iron deficient. I told her I run 50 miles a week, but was told that wouldn't be why I was iron deficient. She put me on 130mg of elemental iron per day and sent me back to my primary care physician.  He decided to take a wait and see approach and after a few weeks of taking the iron supplement, I began feeling better. At 3 months, my hematocrit and hemoglobin had shot up. I knew it, too. I felt fantastic. It seemed to be the end of the story.


Unfortunately, that good feeling didn't last. Fatigue began to return. I would go in for more blood tests, but my CBC and iron levels looked normal. At 9 months, the doctors told me I could stop taking the iron supplement. I did, but began to feel progressively worse. After a couple months, I restarted the iron supplement. At my most recent blood work, my levels were still normal, but had uniformly fallen. My doctor has now told me to take 65 mg of elemental iron daily to hold my levels steady.


I also recently began having bowel disturbances. I do not typically eat a lot of bread, pasta, or cereal and began noticing the two events seemed correlated. I mentioned this to my doctor on Monday and he ordered blood tests for celiac, which are pending. Also, I'm on an anti-depressant.


Has anyone else had iron deficiency anemia, that responded to oral iron, who was then diagnosed with celiac? I don't have other symptoms of malabsorption. I had b12 and folate tested and they were fine. I don't have any of the other symptoms of celiac that seem commonplace. I have no rashes. I haven't had excessive diarrhea, though have had loose and pale stools. Recently, they did seem correlated to when I would eat bread or cereal.


Still, I don't think I have celiac. I think the iron deficiency comes from my running, even though the hematologist said it wasn't. I'm interested in knowing if anyone else had iron deficiency as their primary symptom and was then diagnosed with celiac.


I should get my test results back next week.


Hi Cookies... and Welcome to the Forum.


Iron Deficiency/Anemia is very common to undiagnosed Celiacs.  I agree with your Doctor that running would not cause this.  Some Celiacs have no symptoms, very few symptoms, or a boat load of symptoms.  Depression at any level is also associated with Celiac.  Here is a list of symptoms.




Here is information for proper testing.




Keep eating gluten until all testing is complete, including Endoscope.  



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#923106 Boston- Four Thumbs Up!

Posted by GF Lover on 08 July 2014 - 03:31 AM

Awesome Stephanie.  Your son looks very happy. and the pic with Dr. Fasano, The Celiac God, is awesome.



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#922404 As For Other Foods, Do Tomatoes Or gluten-free Bacan Make Anyone Else React?

Posted by GF Lover on 02 July 2014 - 03:02 PM

That's a loaded question...lol.  Don't eat the two foods together? 



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#922294 The What's For Dinner Tonight Chat

Posted by GF Lover on 01 July 2014 - 04:58 PM

Pizza all around....


Went for a 2 hour drive to get the only gluten free pizza I can have, the ones I make myself are really not that good.  We got four pizzas all together.  One for daughter-in-law (taco pizza), one for me (ground beef and green olives) 1 for Hubs (pepperoni and green olives) and brought one home for my son.  

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#921978 I Think My Doctor Is Wrong?

Posted by GF Lover on 29 June 2014 - 11:04 AM

I would suggest you contact your Doctor right away.  A Celiac does not typically develop leaky gut after 12 years, that can happen very early in diagnosis.  If you a still eating gluten free this probably has nothing to do with Celiac.  You should see a REAL Medical Doctor or Neurologist about your symptoms.


None of us here are doctors and should not help you with your current symptoms unless you want to talk about diet changes.


I would again stress calling your Medical Doctor.



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#921428 Dad Brought Home A Bag Of Wheat Gluten, Now I've Given Up.

Posted by GF Lover on 24 June 2014 - 06:37 AM

Hi Mermaid.


You are definitely going through a difficult period right now.  A couple thoughts come to mind.  For the practical issues, how about an electric griddle, a crock pot and a toaster to keep in your room.  A toaster is about 10 bucks.  A griddle and crock pot can be purchased second hand since they can be easily cleaned.  Goodwill stores and Salvation Army Stores usually have these items available.  You could then get some hot meals with many more options.  Do you have "marked" gluten-free condiments in the fridge?  If your frozen items are packaged you don't have to worry about CC.  If the outer package has crumbs on it from the freezer then rinse it under water before opening it.  There are more things you can do, just give some specifics and we can brainstorm for you.


Now for the Family.  I'm assuming you are living with your parents, brothers/sisters?  I'm also assuming you are an adult?  Ok, think about this.  Call a family meeting.  Let them get a good look at you and how your fairing.  Tell them you are getting seriously sick again.  Tell them how it effects you mentally and emotionally.  Tell them how you feel they don't care about your well being.  Tell them you need some support at this time in your life.  Tell them everything bottled up inside.  Cry, yell, rage, plead, whatever you are feeling.  Ask them if THEY have any suggestions to help with CC.  


Lastly, you can't give up.  Seriously, it's not an option.  If there was ever a time in your life to advocate for yourself, it's now.  I know the feelings you are feeling.  It's very hard, yes.  You can get through this.  If you don't have your health you have nothing, trust me on this.  We can all help you with individual situations but your the one who has to do the work.  We are all in this Celiac thing together!



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#921323 Scared Of What Colonoscopy Might Find

Posted by GF Lover on 23 June 2014 - 12:23 PM

Hi Beanie.  Turn your thinking around.  You FINALLY will find out if there is a serious problem "down there"  It is always better to know, then you can take appropriate actions.  Keep a positive attitude going and try to relax some.  This really is a good thing!!


Good Luck.



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#921295 The What's For Dinner Tonight Chat

Posted by GF Lover on 23 June 2014 - 09:53 AM

Peacocks Rule  :wub:

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#920355 The Funny Pages - Tickle Me Elbow - The Sequel

Posted by GF Lover on 15 June 2014 - 07:04 AM

Letters between son and dad

Dear Dad,
$chool i$ really great. I am making lot$ of friend$ and $tudying very hard. With all my $tuff, I $imply can't think of anything I need, $o if you would like, you can ju$t $end me a card, a$ I would love to hear from you.
Your $on

The Reply:
Dear Son,
I kNOw that astroNOmy, ecoNOmics, and oceaNOgraphy are eNOugh to keep even an hoNOr student busy. Do NOt forget that the pursuit of kNOwledge is a NOble task, and you can never study eNOugh.

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#919589 Disability

Posted by GF Lover on 09 June 2014 - 12:46 PM

I know there are posts out there about this subject, but they all seem old. 


Has anyone had any luck filing for disability benefits?  I am getting a copy of my eleventeen gazillion page medical report and trying to figure out which information is going to be the most relevant or if I should just give it all to them.  Do I need my doctor involved or is that only if I need to appeal?  I am hoping to at least get the whole application process started and maybe ( not holding my breath) a preliminary answer from SSI before I go see my doc July 8th.


Any thoughts or experiences would be appreciated.  Thanks in advance.


If you don't have any debilitating issues aside from Celiac, it is highly unlikely that you will qualify.  Most people have a 1 to 2 year wait until a final decision is made by Social Security.  As Gemini said, you should be right as rain by then and be living a healthy life.



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#918074 How Bad Is Sugar?

Posted by GF Lover on 28 May 2014 - 02:41 AM

Hi Colleen, you asked to see some research…


From the CNN Health website:


(CNN) March 2014 -- The World Health Organization wants you to stop eating so much sugar. Seriously. The WHO is encouraging people to consume less than 5% of their total daily calories from sugars. Most Americans still consume much more. For an adult at a normal body mass index, or BMI, eating 5% would be around 25 grams of sugar -- or six teaspoons. That's less than is typically found in a single can of regular soda, which contains about 40 grams of sugar.


From Dr Weil's website:


"It is becoming increasingly clear that chronic inflammation is the root cause of many serious illnesses - including heart disease, many cancers, and Alzheimer's disease. Inflammation is the body's way of getting more nourishment and more immune activity into an area that needs to fend off infection or heal. But when inflammation persists or serves no purpose, it damages the body and causes illness, which we see when the immune system mistakenly targets the body's own tissues in (autoimmune) diseases".


"Learning how specific foods influence the inflammatory process is the best strategy for containing it and reducing long-term disease risks. As part of an Anti-Inflammatory Diet, reduce your consumption of foods made with wheat flour and sugar".


Hi FruitE,


Like Dr. Weil's site, most of what I read when researching the subject is opinion and the ol' "research shows" line without providing sources for the information.  In the time I spent looking I could not find any peer reviewed studies or legit research on the good/bad effects of consumption of sugar.  All that I read was about how over consumption of highly refined carbs (sugars) lead to obesity to diabetes and heart disease and they were talking about excessive amount of refined sugar added to processed foods and blood sugar levels.


I think with all the "recommendations" on appropriate sugar consumption and how "bad" it is for you drives many people to cut sugar out all together, which "they" say is not good for you either as the body does need some sugars to function (I read that in my search but don't have the source at hand but I think it was Webmd.)  I also read some info from a couple of Pediatricians that newborns will choose a sweet taste over other tastes.


I would imagine that the natural sugars in fruits is plenty to sustain us.   I also believe that moderation is the key to everything.  As for myself, I try to maintain a "low" sugar diet per my Oncologist but that is deceiving because "low" is really just the recommended amounts.  


I guess in the end it all boils down to not cutting out all sugars but choosing natural ones over processed and limiting "sweets" to a reasonable level.  That said, I do make brownies on occasion, have some ice cream here and there, enjoy a candy bar once in awhile and I am a sucker for Cherry 7Up.  I don't over indulge in sweets, I think of them as "something special" to have.  



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