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Thank God I Now Know


adiftime

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adiftime Rookie

Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5


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sickchick Community Regular

Nice to meet you, Billie. You are in the right place. :)

SallyC Newbie
Nice to meet you, Billie. You are in the right place. :)

Yes Billie you are in the right place and you will learn here that doctors don't know everything.

Canadian Karen Community Regular

Hi Billie....

I am glad you found us! There's a bunch of really great, supportive people on here who are extremely knowledgeable not only about celiac, but related disorders also. Lots of us have numerous autoimmune disorders (they tend to come in clusters....).

Our motto here is there is no such thing as a silly question. Anything you want to ask, just fire away!

Welcome to the family!

Karen

tiredofdoctors Enthusiast

Welcome! I think you will find that this forum has some of the best, most kind, caring and knowledgeable people you will find. When I was in the process of being diagnosed, I honestly don't know what I would have done without them. I met my best friends through this forum.

Please know that you are NOT alone . . . and that you are in glad company. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

Canadian Karen Community Regular
. Just watch out during the full moon . . . . . . . . . . :lol::ph34r:

Lynne

Hey! I resemble that remark!!!!! LMAO!

:lol::P

adiftime Rookie

Thank You all for your warm welcome. Like I said I AM SO GLAD I FOUND THIS SITE!!

One day at at time, One new item tried at a time, and One new person a day told about this disease!

That's my new motto.

Good Luck to You All and God Bless Each One of you for a Healthier tomorrow.

Billie


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Piccolo Apprentice

Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

adiftime Rookie
Billie,

Welcome to the board. You and I have a lot in common. I am just a few years older then you, but our weight is about the same. I weigh about 77 as I write this. I have been this weight for years. I can't gain either. At least I can claim to be the smallest in my whole family. The only problem I have being small is I have osteoprosis and I working on fixing that.

Susan :D

Hi Susan,

How low was your weight when you were first diagnosed? Did you lose more after going on the gluten free diet? Do you have trouble being able to eat enough calories in a day? My dietician wants me to eat 1800-2200 calories a day, right now I'm averaging 1500-1600. Just not hungry. But I am also some what of a picky eater.

Piccolo Apprentice

Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

adiftime Rookie
Billie

I have not been diagnosed. In April 2006 I had my blood drawn for 96 food sensitivities. I was positive for 21 different foods including wheat and gluten. I went gluten free after receiving these results. Since I have had a few reactions from sometimes unknown ingredients I am afraid to try any foods that I am sensitive to because I don't like being dizzy.

You ask about my weight it has remained steady for years. I got pregnant when I was 73 lb. My top weight 9 months pregnant was 92 lb. (18 years ago now). I did see a nutritionist to find a healthy way to gain weight and now that I am gluten free I am up to about 77. It has taken me two years just to gain the four pounds. I cheer at any weight I gain. My clothes are finally getting a little snug. :D I eat about 1700 calories a day. I keep track of the foods and calories on mypyramidtracker.gov

Susan

Susan,

Guess I hadn't thought about being tested for other food allergies, being able to be done through blood test. That would sure be a lot better than finding out by eating the wrong things and ending up sick.

I weighed 115# when I checked into the hospital to have our daughter, left hospital weighing 98 and have never gained above since. (33 yrs ago)

I've been keeping track of my foods and weight on calorie-count.com. It looks like it does a lot of the same thing your website does, such as keeping track of activities etc..

Billie

Arpita Apprentice
Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
MrsG Newbie
Hi! Not sure how or where to start. I am a 54 year old female that has just recently been diagnosed with Celiac Sprue, Diverticulitis, Gastritis, and Lactose Intolerant. I am currently 5
MrsG Newbie

Hello,

I too am new here- just found out on 9-11, My story goes way back that it all starts to make some sort of understanding to it... meaning that I had so many things wrong with me that I simply didn't want to complain to anyone anymore and I really just thought I wanted to end it all. I can truly understand what you are dealing with and that if you ever need to just vent please do so - I hardly ever sleep and I am always (shall we say Upshucking) so I thank you for your story and I will share mine with you as well.

EMAIL ME AT MRSGRAZIANO@AOL.COM I would love to talk to someone that understands the emotions that go with this. I am here for you-24/7 I Understand You. much love and I hope you are feeling ok now that you know YOU ARE NOT GOING CRAZY!!

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    • FayeBr
      Hi all. I was diagnosed 3 years ago after suffering for many years of misdiagnosis. There are a couple of things I’d like to ask. The first is about corn. Do you react to it like gluten. My dietician told me that corn should never be a problem for me and suggested probiotics with corn starch and other corn ingredients in. I had stayed away from corn for 2 years beforehand and should have trusted my gut (no pun intended) because after 2 capsules, I have had the worst reaction for a long time. All the usual gut problems (pain and D) migraine, fatigue, aches and pain, tinnitus etc etc. (I could go on) Does anyone else react to corn like this?  Also, for years now I have been going downhill with my health neurologically. I have to now walk with a stick as I have big  balance issues, I fall, I have numbness in legs and pins and needles. I feel like I can’t control my body with movements. They have said possible MS, fibromyalgia, ME etc etc. But my dietician has said it’s classic gluten ataxia symptoms and to see a professor here in the UK who specialises in this field. Does anyone else have this and what symptoms do you have? Thank you 
    • knitty kitty
      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
    • knitty kitty
      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
    • knitty kitty
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    • trents
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