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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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    • Inkie
      I  notice a reaction to tea bags, possibly due to gluten or other substances. Is this recognizable?
    • trents
      The blood tests you had done are not the main ones. The two main ones are the "Total IGA" (to check for IGA deficiency) and the "TTG-IGA". Current guidelines for the "gluten challenge" when people have been gluten free for a significant time period are the daily consumption of at least10g of gluten (about the amount in 4-6 slices of wheat bread) for at least two weeks leading up to the day of the blood draw. That should give you some perspective.
    • Xravith
      Thank you, really.  I took a test for DGP-IgA and DGP-IgG. Effectively, it is not enough to discard Celiac Disease. I was consuming gluten until then, I only started gluten-free some days ago, when the symptoms became horrible and now I feel considerably better, which is a second confirmation that gluten is the main problem. It's been more than 4 years I have the same suspect, when I first thought gluten was causing me problems, I made a gluten-free diet for a year, I felt really good as never before. However, neither I or my parents were well informed about Celiac disease, so none of us tried to make further exams. My father suffer digestive problems and other members of my family as well. Unfortunately, no one have ever been tested for Celiac disease. I'll have to restart eating gluten in the next weeks, so I can make a serious blood test in laboratory, hopefully between two or three months.
    • trents
      As Scott said, in order for celiac disease testing to be valid, you need to be eating generous amounts of gluten on a regular basis for weeks or months before the blood draw. The blood tests are designed to detect antibodies that the immune system produces in response to the ingestion of gluten. It takes time for them to build up in the blood to detectable levels.
    • Scott Adams
      Based on what you've described, it is absolutely crucial that you pursue further medical exams for Celiac Disease and related conditions with a gastroenterologist. Your symptoms—especially the worsening fatigue, loss of muscle mass, neurological symptoms like migraines, and palpitations, coupled with being underweight—are significant red flags that extend beyond typical IBS. The negative home test is not reliable, particularly given your concern about sample contamination and the fact that you were likely not consuming sufficient gluten at the time for the test to be accurate, which is a common issue. While probiotics like Bifidobacterium Infantis can support gut health, they cannot resolve an autoimmune response to gluten or heal intestinal damage caused by Celiac Disease. Your declining blood test results, even if still "in range," further indicate a trend that needs a doctor's investigation. Please do not hesitate to seek a specialist; a formal diagnosis is the first step toward getting the correct treatment, allowing your body to heal, and finally addressing your weight and overall health concerns. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
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