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Latest Celiac Disease News & Research:
Everything posted by beachbirdie
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ARCHIVED Help With Interpretting Results
beachbirdie replied to Mom2-2girls's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
First, I second the suggestion to edit the post to remove any personal information. Anyone can see it, it can also be picked up by robo-harvesters. Better to be safe! Edited to add: Ahhh, good, I see you cleaned it out! Now on to the tests. The anti-EMA is quite high. Endomysial antibodies are a strong sign of tissue damage, and are pretty... -
ARCHIVED Please Explain Ema Testing
beachbirdie replied to Mom-of-Two's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
LOL, at this level of detail I think you need Skylark! I understand the process vaguely, that's about it. Basically, as I understand it, the ratio refers to the number of dilutions, not the number of antibodies. So, the 1:40 is just saying there is one part patient serum in 39 parts of the diluting solution, making 40 parts in total. That is the last solution... -
ARCHIVED Worried About Blood Results
beachbirdie replied to Vicky-1989's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
TtG can be related to other autoimmune conditions: thyroid diseases (Grave's/Hashimoto's), liver conditions (autoimmune hepatitis), diabetes, Inflammatory Bowel Diseases (Crohn's) among them. Ask for copies of your blood tests. Even in England I think you can get access to that information. -
ARCHIVED Please Explain Ema Testing
beachbirdie replied to Mom-of-Two's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Ohhh...I see you wanted to understand the dilution thing. Basically, what they are doing is repeatedly diluting the sample (doubling the dilution, halving the concentration) to the point they can no longer see the antibodies. So, the more times they dilute it, the more antibodies there are (the higher the concentration). The higher the second number... -
I will try to answer a couple of your questions, I am sure others will be along to help with more. First, I recommend you go to the Newbie 101 topic (here... ) started by one of the great members here. It is chock full of stuff that can answer a lot of questions. You might also post in the International topic and just drop a post titled "Anyone...
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ARCHIVED Got Biopsy Results Today
beachbirdie replied to tctwhite's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
That is an incredible waste of time and money. I would have been very, very angry! Seeing the gastritis IS a bit of a clue however, you DO have inflammation in there that is chronic. Keep us posted on how you are doing as you get more time behind you on the diet. -
ARCHIVED Yay, She Is Starting To Like Gluten-Free Substitutes!
beachbirdie replied to Minette's topic in Parents, Friends and Loved Ones of Celiacs
That is a huge step in a good direction! Good news! Kids are so funny at that age. I have a nephew who just turned 6, and up until last winter it was quite amusing to give him something new to try, and watch his reactions. I can't tell you how many times he got a blank look on his face and just let the food fall out of his mouth. We finally got him... -
ARCHIVED I Guess This Is It?
beachbirdie replied to gatita's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
At this point, if you can commit to staying gluten free, there wouldn't necessarily be a point to undergo gluten challenges and testing. On the other hand, if you still have symptoms, you would want to pursue that just to make sure you don't have something else. Also, if there are special needs such as dining plans in college (or assisted living, for... -
ARCHIVED Please Explain Ema Testing
beachbirdie replied to Mom-of-Two's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
anti-endomysial antibodies (EMA) are very specific to celiac. EMA in the presence of TtG screams "HELLOOOOO....TISSUE DAMAGE GOING ON...." The doctors who dismissed you with instructions to continue on gluten are dolts. Did you happen to get a copy of the biopsy report from the doctor? It would be interesting to know how many samples they took and... -
ARCHIVED Negative For Celiac, But Positive For Dh? Possible?
beachbirdie replied to lil'chefy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
LOL! Glad you got your answer! This really IS a great forum. -
ARCHIVED New Here, Worried I May Have celiac disease
beachbirdie replied to kara-leigh's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
There are a lot of things that can contribute to hair loss. It could be as simple as nutritional deficiency from malabsorption of nutrients, it could be a hormone shift. When you get settled in with a new doc, be sure that a good thyroid test is included. That is one of the very common causes of hair loss and other symptoms. Make sure to get a TSH,... -
ARCHIVED Pre-Endo Freak Out
beachbirdie replied to mbadger2's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
So glad everything went smoothly. Sounds like you have an amazing doctor as well. I think people get really good care from docs that have a personal stake in a condition! How rare to find one with celiac in his family. -
ARCHIVED Gluten Blood Test
beachbirdie replied to Alyssa B's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
I'd wait longer than 3 or 4 days. If it were my child, I'd wait out the two months and gluten him up good. Or, I might just make the whole family gluten free since Dad has a diagnosis. Makes the chances of a child having it much greater. -
From a squib on the 'net, Carrabas appears to have some knowledge about gluten, and Open Original Shared Link. I found a listing a while back of restaurants that have gotten very good reviews for their gluten handling, but cant' find my way back to the page! Here is another, from Travelsite.com...they have a listing of numerous restaurants that can be...
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ARCHIVED Good News Bad News
beachbirdie replied to Razzle Dazzle Brazell's topic in Introduce Yourself / Share Stuff
LOL! You sure know how to put a great spin on bad things! Your positive attitude is really inspiring. -
With a low FT3 it is possible you are not converting your T4 to T3. T3 is the active hormone picked up and used by your cells, T4 is sort of a "storage" form, and the body converts it to T3 as needed. If your FT3 is too low, you can feel hypothyroid even with normal T4 levels. Are you by chance taking any thyroid medication? Just went back to...
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ARCHIVED Some Second Opinions Needed.
beachbirdie replied to Stephanie Young's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
If you were planning to pay out of pocket anyway, you could consider ordering your tests through a company like Open Original Shared Link. You go to the website, look for a LabCorp location near you, choose and order your tests, then go get the blood drawn. I've used them many times, especially during times we've been uninsured, and saved a lot of money... -
ARCHIVED Newbie, Guess I Have Celiac!
beachbirdie replied to ForAandA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Don't stress about the cost of gluten-free food. You do not need to go out and buy all the stuff that tries to replace your gluten-filled foods. We use almost NO commercial gluten-free breads, and use the pastas only occasionally. We also don't use commercial mixes for the most part, though we have some on hand for those emergencies where you can't think... -
ARCHIVED Still Feeling Weird
beachbirdie replied to grodeylocks's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Basically a starch free diet is one free of grains and starchy vegetables. More specifically, the Specific Carbohydrate Diet or GAPS diet do without sugars, dairy, grains, starchy vegetables, most beans (except navy and black beans) based on the kind of sugars they contain. The diets are designed to starve out bad bacteria and give the good ones a chance... -
ARCHIVED Newbie, Guess I Have Celiac!
beachbirdie replied to ForAandA's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Yep, you are part of the celiac clan. Read, read, and read some more around here. There is lots of wonderful, helpful information that will shorten your learning curve. Ask lots of questions. Plenty of patient, knowledgeable, experienced people here who will be glad to help you and encourage you. Even if the biopsy comes back negative, your blood... -
ARCHIVED Still Feeling Weird
beachbirdie replied to grodeylocks's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
Adding to what others have offered, I might ask the doctor to check your actual thyroid hormones and check for thyroid antibodies. TSH can fluctuate a lot, and it doesn't tell you all that you need to know about your thyroid. Food sensitivities and nutritional deficiencies are the next thing to check out. Have you considered trying a starch free diet... -
ARCHIVED In Hindsight, Anyone Regret Skipping The Endoscopy?
beachbirdie replied to AGH2010's topic in Parents, Friends and Loved Ones of Celiacs
Thanks for posting! I am so glad everything went well and that your daughter was not too stressed by the whole thing! How nice to have a doc who understands toddlerhood! -
ARCHIVED Do I Have Celiac? Lab Results
beachbirdie replied to mamato4's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
None of us can say for sure "you have celiac" because most of us are not medical professionals. That said, there is a strong chance that you do. If your thyroid is fine and your liver is fine, and you don't have symptoms of other autoimmune diseases. Any chance your doc might do the genetic testing for celiac? It's expensive, and not really diagnostic... -
ARCHIVED What Could It Be? Pirate Booty? Gator Aid Or Vitamin Water?
beachbirdie replied to mommyto2kids's topic in Super Sensitive People
There is an awfully lot of sugar in Vitamin Water, and it is in the form of crystalline fructose. There is some discussion out in the interwebz suggesting that this form of fructose is actually worse than high fructose corn syrup. Did your vitamin water have erythritol added? That is also a sweetener, and after drinking vitamin water for days to combat... -
ARCHIVED Good News!
beachbirdie replied to kb27's topic in Parents, Friends and Loved Ones of Celiacs
That is such great news! Nice work, both of you!