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Member Since 08 May 2012
Offline Last Active Today, 03:06 PM

#935067 Help Me Figure This Out Please

Posted by 1desperateladysaved on 16 November 2014 - 07:48 PM

I would stick to eating as simple foods as possible, (that you are sure you don't react to) and get help if and when you can.  My favorite food for problem days is chicken broth.



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#932018 Reactions From Breathing In Gluten?

Posted by 1desperateladysaved on 04 October 2014 - 05:26 AM

Yes, this happens to me.  I walk through grocery stores staying as far as possible from the bakery and bread aisles.  I swell up if I walk too near a mini donut wagon.  I got sick while sitting in a kitchen to have my daughter's hair done.  Someone was cooking fish and I swelled up. You mentioned out that you have allergies. I just found out that for me it is because of super-sensitive allergies.  That isn't celiac (which I also have) but I can't tell the difference, because of having both.  I no longer eat out or in other people's kitchens.  I just take my own food and eat it in my own car or outside in the summer.  I have been told to try NAET desensitization for allergies.  I am planning to read a book on it and talk to more people about it.  Allergy desensitization shots are the medical option that I know of.  I have heard these are both ineffective and dangerous.  Some people say they were helped by them.  I would just like to be able to sit around other people eating without having issues.  I do know of a few others that must be this cautious.  I recently tried to ask my physician if I possibly made up these reactions, but she could see the extreme swelling of body tissues and rashes.  She felt that what I said and what she saw matched up.  I really was hoping that I wasn't seeing what I thought I saw!  It is amazing I think that my brain knows some things that I am not aware of.  I mean I can react to barley flour being in the room even if it is just sitting there in an open container.  WEIRD stuff.  I had heard peanut allergies were that way, but previously did not believe it.


One thing you may want to look into is a MAST cell problem.  Food allergies to things I was eating complicated my recovery.  Are your reactions getting stronger or remaining the same?  I am not sure of MAST cell and allergy connections, since I know little about them.  So, here I am 2 + years into gluten free and still have more studying and discovering to do.


You are not alone, but many people with celiac state that they do not react to gluten unless they eat it!  I need to say this so as newly diagnosed people with celiac do not get confused or upset about this.  Some of us do and you are the people I want to help, as I know what it is like!

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#926288 Don't Know If I Should Leave My Job Or Not!

Posted by 1desperateladysaved on 04 August 2014 - 02:49 AM

Best wishes to you in this.  I am so glad you have decided on a new job, but can still do what you love to do!  If I ever find a kind of bread like thing I can eat again, I would send you the recipe!  I use to work in a bakery right before I got Mono and my 30 years of celiac symptoms.   I currently don't know of a bread type that I can eat.  Maybe some vegetable could be ground?  I did sweet potato or pumpkin/squash flour for a while, which was promising until I reacted to pumpkin and tried SCD diet which cautioned about sweet potato until healing was complete.  My GI healing is now complete though, so maybe sweet potato can come back. 


I dried the sweet potato or squash in my food dehydrator and then ground it into flour.


Happy venture to you and I hope you will be able to find another job soon and it will help your health!

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#922500 Soap Question

Posted by 1desperateladysaved on 03 July 2014 - 08:49 AM

I make soap.  There can be wheat germ in it. I carry my own soap in a tin to avoid using public bathroom soaps.  One of my daughter's skin reacts when she uses public bath soap; so did mine the last time I did.  My hands get white and purple splotches.  I am not absolutely certain wheat causes the problem in every case as there can be many ingredients used in commercial soap. 

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#917341 Help: I Need Vegetable Substitutes And Seed/nut Subs.

Posted by 1desperateladysaved on 23 May 2014 - 09:08 AM

Hey Lisa,


I am just about 2 years into non-gluten living.  In the years before that I had figured out several foods not to eat.  I ate pretty much every vegetable available at the grocery store when I was really sick.  I don't think much of avoiding cake, but avoiding squash is just weird.  I feel great, but it really is a good thing that I like dresses so well.  My tummy is bloating up and down.  It use to be always up, so it is actually progress  I finally saw a GI doctor too and she thought I possibly had a gall-bladder issue. She thought that I had done the right labs to gage the situation.  Thanks to my Functional medicine nurse, Dr. Osborne and this forum. 


The GI doctor  didn't think GI issues were such a big deal!  I wonder -I was so small yesterday-and shrinking if she knows what I mean exactly.  I sure don't want my intolerances made little of.  Two days on the couch and four days without appetite is not thinkable for me 3 times a month.. 

Thanks Lisa

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#917232 It Was Supposed To Be Over At Gluten Free! Help :(

Posted by 1desperateladysaved on 23 May 2014 - 03:45 AM

I have done the IgG food intolerance testing and felt it was a real help to me. It tests the blood for antibodies to foods that you are eating.  You must be eating the foods to be a valid test.  I also have used a rotational diet to help find foods I don't tolerate.  You might try new meats and new vegetables, that you hadn't eaten over the years that you were ill.  These you shouldn't have antibodies too.


Please don't give up.  The process can be complicated, but it does get easier as one peels off layers of illness.  You are traveling up hill, but even when you don't see through the fog, when you are going up, you will get somewhere.


Feel free to Pm me if you want to discuss the tests further.  Natural practitioners often use them, and I use natural practitioners to help me in healing after 30+ years of trouble.

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#913445 Not Coeliac But My Life Continues To Be Hell. Can Doctor's Get It Wrong?

Posted by 1desperateladysaved on 22 April 2014 - 06:01 AM

I haven't had dairy in years and grain I haven't eaten in 2 years.  I do eat healthy foods meats, vegetables, and nuts.  I shun sweets.  My calcium levels have been tested and found adequate.


I wonder if your total IgA levels were checked.  The body can be deficient in it and it can make the test false negative.


Hope you will soon feel healthy again!  Also hope that you find compassionate helpers in your quest.



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#913323 My Niece

Posted by 1desperateladysaved on 21 April 2014 - 05:31 AM

I am glad she has you to speak up.  I hope she will get some answers and soon walk again.



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#912415 Digestive Enzymes

Posted by 1desperateladysaved on 12 April 2014 - 01:41 PM

I buy Genuine NZimes Dr. Howell's Extra-Strength from Azure.  It is 4 oz of powder containing Amylose, Protease, Lipase, and cellulose.  No wheat, soy, yeast or dairy products.  I sprinkle 1/4 tsp of it into a small amount of water.  The directions say you can sprinkle it over your food.  I like that there is no capsule.  Several months back sometimes I didn't digest my capsules, so it was an advantage.  When I was the only one using it one canister lasted a couple of months +.



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#906893 Coming Up On 9 Months gluten-free And 7.5 Months Li

Posted by 1desperateladysaved on 23 February 2014 - 09:11 AM

So good to hear!



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#906062 Butter

Posted by 1desperateladysaved on 15 February 2014 - 05:50 AM

I couldn't use ghee either, so I use coconut oil.



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#905007 Hello!

Posted by 1desperateladysaved on 04 February 2014 - 10:50 AM



I did some crying at first, but now I am happy because I am BETTER.  I hope all the same for you (but for the crying).  My story is similar in many respect.  I carried the celiac weight at least 30 years before I couldn't carry on any longer.



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#903174 Is It The "g Word?"

Posted by 1desperateladysaved on 19 January 2014 - 08:27 AM

I am glad you are checking in to this.  I believe you should check for celiac disease.  You must be eating gluten for the blood tests to be valid.  After that whether the blood tests are positive or negative, you should try going 100% gluten free.


Since you are eating mostly plants, make sure you get enough protein. I felt the absolute worse when I drifted into less meat and more vegetables the summer before my diagnosis.  Your declaration of feeling healthier on such a plan is incredible to me.  I know people are different though, so it certainly could be!   Don't raw lentils bloat you?  I soak mine for 24 hours, discard the water,  and cook them until they are soft.


Celiac disease can cause constipation as I have seen on the forum.  Doctors don't think of celiac unless one is skinny and has diarrhea.  I hope you can find one that will listen to you.


In the mean time (Before testing) you could start taking a high quality, gluten free, multivitamin and vitamin B.  If you have celiac or if you are vegetarian very long you can get short on Vitamin B.


I wish you all the best on your quest for healing.



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#891811 Why Do I Have Symptoms From Activity?

Posted by 1desperateladysaved on 13 October 2013 - 06:46 PM

Sometimes, I think, that ones body is working so hard on the recovery that it doesn't have much left for other things. 


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#891522 New Celiac - Peripheral Neuropathy?

Posted by 1desperateladysaved on 10 October 2013 - 06:06 PM

Omg. Sorry. I just had to chime in here. You are the first person EVER I have heard of to mention internal shaking! I had it for years, especially when tired or waking up from sleep. I thought it was just me. It's gone now as I have been gluten-free for nearly a year (my god, that's been a long year).... I had no idea it could be vitamin related... And I have never heard of anyone else experiencing it! Sorry, that's all... Just had to comment though!
In terms of peripheral neuropathy, I had tons of that... Sharp pains, hot pricking pains, numbness, pins and needles, ants crawling, burning toes, all sorts of things. I had extensive damage to villi. It took me 3 mo the of b12 before I noted an even slight improvement. 6 months, better improvement. Now... Much better, almost gone (dare I say) occasional problems, but hardly much to grumble about.

I also had this internal shaking every day of my life.  I thought I was a very nervous person.  The shaking went away after 3 days on magnesium supplement.  Magnesium can cause diarrhea, (I say this from experience) and my chiropractor has told me not to take it when you are experiencing diarrhea.  You may want to have someone trained in nutrition to counsel you.


I am still having trouble with neuropathy.  Jebby just mentioned hers went away fairly suddenly after quite a long time, so I feel hopeful still.



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