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#938721 Very Discouraged!

Posted by on 20 January 2015 - 07:32 AM

Go back through this thread --- the Newbie 101 --- and make sure you didn't miss anything. I agree it would be best to take the household gluten free and also have him tested to see what his antibodies are doing. 



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#938257 Can't Put On Weight

Posted by on 11 January 2015 - 04:49 PM

Hi y'all!  :) As a southerner you might call me the queen of fattening foods. :D  :D Okay, I'll get serious now.

I was 103 lbs since I was around 13 yrs. old -- I'm 58 now. About 5 years before I found out I have celiac disease I began losing weight. I ended up at 93 lbs. when I began eating gluten-free. That was 3 years & 1 month ago. I eat a LOT. I'm 5'1" or a tad more. You want to talk about looking like a skeleton? Twiggy anyone? Did I mention I eat like a horse? No worries about getting enough calories here!!!! I probably eat enough for 2 people. I weighed myself & weighed myself & weighed myself & always the same thing....93 lbs. worse, on occasion I would be down to 91 lbs. :blink:  For 2 and a half years I weighed myself & got depressed every time the scale read the same. I knew I wouldn't gain at first but by the end of the first year I thought surely I could gain at least a pound. When the second year came & went with me stuck at 93 lbs. I couldn't take it anymore; it was too depressing. I quit weighing myself. It was about 4 months later when my jeans felt just a bit tighter than they had been. i stepped on the scale & surprise! I was up 10 lbs. to 103!!!!! I've held that 10 lbs. too.

This is just to let you know it takes time. It took me close to 3 years and I am rabid about not getting glutened. I haven't been glutened once since I went gluten-free and still it took me almost 3 years to gain.

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#938170 Please Help

Posted by on 10 January 2015 - 04:29 PM

Namaste products are free of peanuts, gluten, wheat, soy, corn, potato, tree nuts, dairy & casein. The Spice Cake mix is especially delicious! Here's a link to Namaste so you can see what they make. Lots of choices there!


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#937976 Chef That Wants Your Feedback

Posted by on 06 January 2015 - 05:52 PM

I know Colleen! The list goes on & on!  :D  :D  :D Oh yeh, coffee cake ~~~ I used to make one that had dried apricots & raisins in it ~~ I'm going to throw some in this one. I'm really stoked now & can't wait to try SO many of the recipes. Cinnamon raisin bread, pie crust, cheese bread & more! Wooooooooooo Hoooooooooooo!!!!!!!!!! Let the baking continue! :lol:  :lol:  :lol:  :lol:  :lol:

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#937974 Chef That Wants Your Feedback

Posted by on 06 January 2015 - 04:20 PM

Dear allergiescooked, I tried the America's Test Kitchen biscuit recipe today. OMG! Freakingfantabulous!!!!!!!!!!!!!!!!!!!!!!!!!!!!! They nailed it! For the first time in over 3 years I had a biscuit that was a biscuit! Real, honest to goodness, walking, talking, living, breathing, home made biscuits! They are sheer perfection. If a gluten eater ate one of these biscuits I guarantee they would never know these didn't have any wheat flour in them. I simply can't believe it. I'm still in shock. My husband is still in shock. And they're easy too.


mateo2099, Get America's Test Kitchen "The How Can It Be Gluten Free Cookbook". You'll have to make them yourself but you can have REAL biscuits & gravy! And pancakes, and dinner rolls and bread, & pie crust and on & on. 


The cookbook is worth it's weight in gold!

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#937281 Questions: Skin Biopsy Of Dh

Posted by on 23 December 2014 - 10:14 AM

I understand your frustration IN FULL! And I'm sorry to say that I seriously doubt your HMO derm will do the biopsy correctly. It looks like you've been doing your research & you know the odds of getting a false negative on the blood test as well.


I hear you and I understand your entire rant & you are justified in it. But bottom line is bottom line now that you are aware of all the pitfalls involved. You don't need anyone's permission to go gluten-free. I have not regretted it for one second and am so very glad I did not prolong my suffering by trying to satisfy the reigning establishment. I knew what I had & no one needed to confirm that for me. I knew that the sooner I got started on gluten-free the sooner I would heal. I knew that the longer I ate gluten the longer it would take for me to begin healing. 


There is not a chance in hell that I will ever willingly eat gluten again & most especially not for any medical testing. It's not going to happen. Period. 


I am so sorry this has all gone down for you the way it did. And it must be particularly frustrating when the other derm recognized it for what it is & came so close to doing a dh biopsy. I have no clue why he backed out. Perhaps, just perhaps, if you wrote him a letter appealing to him once again, he might do it for you. 


You know your choices now & it's your decision to make. I wish you the very best. And I think you deserve at least a few hugs.



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#937021 Chef That Wants Your Feedback

Posted by on 17 December 2014 - 04:54 PM

Thank you for the information! It makes a difference that a gluten eater has tasted and can recommend a gluten free item.


I made the dinner rolls today that I had spoken of in an earlier post on this thread. They turned out fantastic! We are both very happy with the results. There are no objectionable flavors and the crumb is perfect. I intend to post about them in the recipe thread & post photos too as soon as I can find time.  

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#935817 Blood Test Results Questions?

Posted by on 30 November 2014 - 11:08 AM

I posted on page 2 that yes, you would have to be eating gluten for 6 weeks to 2 months for a dh biopsy AND if you had not been off the steroids for 2 months prior that would throw a false negative. 

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#934648 Endoscopy

Posted by on 11 November 2014 - 12:12 PM

It's called refractory sprue or refractory celiac.


Well, if you gotta do it, you gotta do it & as long as you're going to do it why not just go for a month & cover Thanksgiving & Christmas? :lol:  :lol:  :lol:

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#933149 Just Want To Share This Small Victory!

Posted by on 21 October 2014 - 06:38 PM

Yaaaaaaaaaaaay for victories! Oh sure you can use ACV for salad dressings. It's better than not having any dressing. Your salad sounds delicious. Great that you didn't get sick. Keep eating salads like that & you'll get even healthier. How about making a Chef's salad with the same dressing you used? Yummy!

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#932386 Diagnosing Dh Rash

Posted by on 09 October 2014 - 10:42 AM

I and every single doctor I have ever been to about this, and I have traveled to specialists in the field would totally disagree.

You are welcome to believe that, but it is not true from a medical perspective.

DH and Celiac disease are classified as Celiac the same way Pneumonia and TB are pulmonary disease. Both have the same root cause but both effect different biological functions in your body. I do not get gas or diarrhea from eating gluten. I only know I am having an attack when i feel an adrenalin surge. One bite of bread no matter how small sets me off.


I have sat though lectures and read about AG4 proteins and antibodies way over my head. You are welcome to do so too, if you think you can understand it. 

But, when I bring them to my MD, this is about all I can get out of his explanation.

No, no, no! Dh IS celiac disease! you have been given links to the medical proof of that. The U of Chicago Celiac Disease Center is one of the premier authorities if not the premier authority on celiac disease. 


Not all celiacs get GI symptoms. Did you know there is such a thing as silent celiac disease where there are NO symptoms at all? It's true. But those people have villi damage never the less.

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#931953 Recovery Happens. Believe It!

Posted by on 03 October 2014 - 10:23 AM

Awwwww, you guys are getting me all teary eyed but there's a huge smile on my face at the same time.


((((((((HUGS))))))) to all of you!


Happy healing! :)

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#931879 Recovery Happens. Believe It!

Posted by on 02 October 2014 - 05:00 PM

In 2 months I will have been strict gluten free for 3 years. I have dermatitis herpetiformis, the skin presentation of celiac disease (for those of you who don't know me). 


I have good news to report. I am 5'1" and celiac disease had me down to 93 (at times 90) pounds. After going gluten free I would weigh myself & get depressed that I was not gaining weight. This went on for literally years. I did know not to expect much the first year so I wasn't that concerned & it didn't bum me out too much during that first year. By the end of year 2 though, it was getting pretty depressing every time I stepped on the scale & I hadn't gained anything. I got tired of seeing the same thing every time I stepped on the scale so I just quit weighing myself. Just about the last month or two, I noticed my jeans felt a bit tighter than they had been. I screwed up my courage the other day & stepped on the scale. 103. I thought it was an apparition. I Have weighed myself every day for 4 days & it always turns up 103! It's REAL!!!!!! FINALLY, FINALLY!!!!!!!

Ha,ha,ha,ha,ha! If this keeps up, I'm going to have to get a new wardrobe because of weight gain for the very first time in my life (I'm 57)! :lol:  :lol:  :lol:  :lol:  :lol:


Also, my bp had been steadily inching up in the years before I found out I have celiac disease. Well folks, my blood pressure is now back to so normal there probably aren't many people in the world who have such normal bp. 


I've told you the things that can be measured. The other things like fatigue & gas, bloat, migraines, depression, etc., etc., etc...... have all resolved.


I do still have the rash. It is a billion times improved but I still get itchies here & there; rarely ever blisters any more. This is a humongous improvement. Those who know me, know what I'm talking about. I had the rash bad. It's just going to be a long time for me before I'm completely free of any vestige of the rash but I can certainly live with the state of it now. 


I have been reading in this forum thread after thread where you "newbies" are chomping at the bit for permanent improvement. I wanted to post this to let you know it really & truly WILL happen for you but it is not something that happens in mere months, nor in 6 months, nor in a year necessarily but it WILL happen. Some take longer than others. Just stay the course and know that one day it will be YOUR day to write a post like this.


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#929019 First Time Poster - Dh Attack

Posted by on 31 August 2014 - 05:49 PM

That's the problem with Dapsone. You take the pill, you have no rash, therefore you don't have a clue when you're getting a little cross contamination but the antibodies are still getting deposited under your skin. Obviously this is what has been happening with you as you say you've had a few attacks while on the Dapsone. Your Dapsone dosage wasn't enough to override the gluten you were getting. I would think the iodine should not make a difference while you're on Dapsone. BTW, while I'm thinking about it, potatoes are fine -- it's the skins that contain the iodine so peel them deeply & you can eat potatoes.

And while you were relying on the Dapsone to take care of the rash; the villi in your small intestine were being damaged as well as all the other nasty things celiac does to us. You've been risking cancer, neurological damage, upping the risk of other auto-immune disorders, thyroid disease & a host of other problems. At the very least, your doc should run a thyroid panel & check your vitamin levels and your iron.

I have never read a medical text that says Dapsone should be taken for more than 2 years for dh. It's only supposed to help you during the time the antibodies are getting out of your skin. it's not supposed to be a lifelong drug for dh control. Has your doc been running tests to make sure the Dapsone is not doing other bad things to you? You really are supposed to be carefully monitored while taking Dapsone.


I have never read that you can build a tolerance to Dapsone. I think what's happening (I'd bet cash money on it) is exactly what I stated in my first paragraph. You may have never been totally gluten free but instead getting cc'd all along.


As to the fluoride triggering an attack --- nope, never heard of that & I think someone doesn't know what they are talking about if they are saying this. If you read that in a medical text or some bonafied study then I would greatly appreciate a link to that.


As much as I hate to say it, at this point, you might need to have your Dapsone dosage upped to control the rash. Or you can go cold turkey & ditch the Dapsone right now & suffer the consequences. I'm really sorry you're going through this & I'm really sorry I have to say this but you know you have done this to yourself. It may take years for the antibodies to get out of your skin & until then, the rash can wax & wane even if you're being strict gluten free. 


You should read the Newbie 101 & make sure you have all the rules down & aren't getting cross contaminated. Here's a link:



You need to be brutally honest with your doctor & let him/her now that you've been cheating on the diet & have likely been getting small amounts of gluten all along for the past 14 years that you've been on Dapsone.


You can try going low iodine for 2 weeks & see if it helps you. Here's a link to the low iodine diet ( you of course wouldn't eat the gluten parts of it). It won't hurt you to go low iodine for 2 weeks.



If you have children, you know you should keep an eye out for celiac disease in them.

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#927468 Pepcid And Thiamcinolone

Posted by on 14 August 2014 - 02:36 PM

I DO understand! I had it all over my scalp too & it drives you crazy not really being able to see. I like the towel turban hiding an ice pack!  :lol:  :lol:  :lol:

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