0
Guest DanceswithWolves

I'm Getting Recalled!

Rate this topic

Recommended Posts

Guest DanceswithWolves

Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure::unsure::unsure::unsure:

I'm not sure why they want me back to take out more blood...maybe the first batch got tainted or spilled?

What should I do? Should I eat some crap food before I go into the hospital this Monday or Tuesday before the Celiac test? I need to ask them if they've already completed that test.

I also have an appt. to see a Gastro-doc this Thursday. I think he just wants to talk to me before any endoscope is done.

I'm still taking this Clidinium for IBS, but it really makes my stomach feel sick.

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


Weren't you eating alot of stuff w/ gluten in it before you got tested? It seemed like you were if I'm remembering correctly. I would find out ASAP which test they need the blood for. They may have already completed the Celiac test...in which case you wouldn't need to worry about it.

Share this post


Link to post
Share on other sites
Ok, I've been reading on here that I should have Gluten in my system for the celiac disease test. I did not know this! I received a phone call asking for me to return for more blood to be extracted, but I'm wondering if I made a mistake by not eating gluten products all this time. I've been eating gluten-free bread and only had about two cravings before my first set of blood tests. Both with Arby's bread. So was that enough gluten in my system for the first time they took blood? :unsure:  :unsure:  :unsure:  :unsure:

Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.

Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.

Share this post


Link to post
Share on other sites
Guest DanceswithWolves
Eating gluten before testing if you have been gluten free is not enough. For testing you need to be eating about equal to 3 pieces of bread a day for 3 months.

Maybe they just need more blood for the testing or maybe something came back abnormal and they are testing you for other things.

<{POST_SNAPBACK}>

Well, I guess I'm screwed then.

I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(

Share this post


Link to post
Share on other sites
Well, I guess I'm screwed then.

I have been eating that Kinicky bread for well over a month now. Before that I was mistakingly eating that other bread (Kamut)....so this test will all be for nothing. Obviuosly I will have a negative for celiac disease. :(

<{POST_SNAPBACK}>

It probably would come back negative but there is a chance it could come back positive. It depends how high your results would have been and how much the gluten free diet brought the # down.

Share this post


Link to post
Share on other sites
Ads by Google:


I was recalled for bloodwork too only to find out that it was because the first sample I gave broke in the centrifuge!! :(

I had a repeat bloodwork 13 weeks gluten-free and it was still positive. It was much better but still positive. It all depends on how much damage you had before going gluten-free. I would still have it done now and if it comes back negative go back on gluten and try again in 3 months, unless you think that will make you sick then just stay gluten-free, and know that you most likely have celiac. A positive response to a gluten-free diet is a pretty good indicator!

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.

Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist. :blink:

Share this post


Link to post
Share on other sites
I went back to the hospital today to give more blood, and the nurse said that this vial would be for testing my liver. Maybe the doctor thought of that the last minute.

Thursday I visit the new Gastrologist doctor. I don't think I'm getting an endoscopy done right away, I think they just want to chat with me first. I have a paper to fill out.

What I'm wondering is after an endoscope is scheduled, should I eat some gluten-filled foods before they look down my throat?

I have a funny feeling they'll just say I have IBS. I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>

For an endoscopy its the same as blood tests and you NEED to be on gluten for a while before getting it done. Biopsies are already hit or miss and a negative one can't rule celiac out anyway but if you are gluten free or just eat some before testing that would be just useless.

Share this post


Link to post
Share on other sites
I'm down to 118 now. It's like a have 0% body fat on me. I look like I either have cancer or I'm a hardcore cyclist.  :blink:

<{POST_SNAPBACK}>

Thats pretty much how I was before going gluten-free. I joined a gym so I could use their sauna and steamroom and they gave me a free consult. trying to get me on some program. They did all the measurements and I had like almost no bodyfat. DUH..I didn't need a machine to tell me that! The guy thought it was great...even healthy to have such low body fat. I was like "Can you not see that I'm wasting away?" :blink: I don't see whats healthy about that....and "NO...I don't need a personal trainer at this time...what I need is a good doctor." :rolleyes: That was before my diagnosis..I'm gaining now. :D

Share this post


Link to post
Share on other sites

Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.

Share this post


Link to post
Share on other sites


Ads by Google:


Guest DanceswithWolves
Yeah, if you can stand the wait, have them schedule the scope a couple months out so you can eat gluten for that time, about 2 pieces of bread, as Kaiti said. Otherwise, it sounds so much like celiac and sounds like your health is falling fast, you could just skip the scope, go gluten-free now and start feeling better. Be strict if you do! Likely, the only thing you will have after a positive scope is a piece of paper you don't even get to keep unless you request it saying that you have it, and then you'll be told to go on the diet.

<{POST_SNAPBACK}>

Well, what I'd like to know if there's any real noticeable damage done down there. It's funny, though ever since I started really researching this and buying gluten-free foods, I'll notice that my mother and father belch quite a bit. When I said something just etasing them "See... you have it too!" LOL , They were like "Everyone belches". If my stomach starts making noise my parents just say..."you're just hungry". I think most of their comments are too calm me down.

I'm on Prozac right now...Day 14. I am keeping a log of symptoms I feel every day. I'll jot down anything.

I'll probably be told that I just have IBS. I tried exercising yesterday and I had a hard time doing 20 push ups. I lost much of my weight around my torso and my legs. I used to have a butt, too. LOL

I will keep that in mind about scheduling the Endoscope further down the road, even if it means I have to eat Gluten again, and take my chances with the fatigue and IBS.

I'll keep u all posted!

Thanks again for being there! :D

Erik

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

Just got back from the Gastro Doc.

After asking a series of questions (more phycological) he went to his computer and linked up with my other doctor for the results of at least some of my blood tests.

He then tells me "You don't have Celiac Disease". It's almost like I didn't hear him say it at first. "You have IBS" He listened to my stomach and took my blood pressure.

So, I told him that from what I've read and heard that if I've been Gluten-Free for awhile now, that wouldn't the test be naturally negative?

He suggested that becuase I cut out all the foods that I've been eating normally before my move to Texas and the stressful job, that is why I lost the weight.

SO I said, "should I just start eating tons of junk food then?" He suggested I eat what I like. He thinks I have reduced any body Fat becuase I am not eating stuff like donuts, cake, etc. He suggested putting back on the weight and then we can draw more blood and test for celiac disease again. I should keep taking my Clidinium for the IBS and stay on the Prozac. I meet with him again in mid-October.

What a humbling experience. Now I feel that maybe I just obsessed and "created" all my symptoms. I even told him about the chills in my hands and feet, but maybe it's because my body is not taking in enough fat content. I know you need fat to maintain a healthy body to some degree.

He's sending me a copy of the results.

I think I'm gonna eat a pizza and drink a beer. F- it.

:(

Share this post


Link to post
Share on other sites
Guest nini

Erik, keep in mind that IBS is just a catch all terminology the medical types use when they don't really know what is causing your probs. It is a SYMPTOM, not a diagnosis. So many think it is a definitive diagnosis and it is not.

My suggestion... if you are feeling badly, go ahead and try the diet and forgo any further testing UNLESS the diet doesn't help you at all. But give it time, several months at least, before you give up on it.

(My little disclaimer... I work in an alternative health care field: chiropractic and massage therapy, and do not have much faith in the medical dr.s at this point. They missed my dx for 34 years and I almost died because of it.)

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

Well, it's been "Day 4" of eating . I've had pizza twice in those four days but I am still going easy on the bread. I woke up this morning and my hands were like ice(even before I took my Clidinium capsule for IBS) I think these pills are time released or something. Some of the side effects are "yellowing of hands" which I have, but I also have very dry hands. It's so strange. Eight months ago, I was taking PPI's almost every day because of my bloating and I had the chills back then; I wasn't even on the Clidinium. Maybe I am just highly sensitive to all these meds?

I'm drinking hot teas all week and it's still summer! :huh:

I haven't heard anything back from my tests besides the gastro-Dr. pulling up my chart and saying "I don't have celiac disease".

Like I said before, he wants me to eat donuts, cake, breads and other stuff to fatten up.

Maybe that's why I am so cold at times.

I am still keping a journal of any symptoms that pop up along the way. Mentally, I feel a little sharper, probably because the Prozac is starting to work. Even though I had to work all weekend, I felt pretty good.

:)

Share this post


Link to post
Share on other sites

Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die. Maybe you can try Enterolab...thats what I did and everthing came back positive.

Share this post


Link to post
Share on other sites

Why do you need a positive test result to choose to stay on the diet? Is it to justify the cost? Did you feel better on the diet? Were you successful at being 100% gluten free for any extended amount of time? I don't think there are any benefits to being properly dx with Celiac. No one has to get a dx to go vegan.

Share this post


Link to post
Share on other sites
Guest DanceswithWolves
Erik,

I had yellow palms, cold body temp, and dry skin the whole time I was sick. I figured it was due to low thyroid but my thyroid always tested fine. I didn't believe the tests since these are all signs of low thyroid. On my own I decided to increase my thyroid meds..I was taking 3 times what I'm suppossed to take but the symptoms were still there and I was still freezing. I took a thyroid test and my doc was irritated cuz my numbers were sky high showing that I was taking waaay too much. Anyways as soon as I took gluten out of my diet my body temp went up and all those symptoms went away. It was definately the gluten causing those things and nothing else. I think you're better off staying on the diet...my original bloodwork was negative too and I went back to eating gluten and I got seriously ill from it and thought I might die.  Maybe you can try Enterolab...thats what I did and everthing came back positive.

<{POST_SNAPBACK}>

This is so confusing I could cry. I mean, I know everyone is trying to help me, but in all honesty, I don't know who to listen too. I was pretty much eating gluten-free foods (to my knowledge) and I think it's just my metabolism that's all screwed up. I'm just gonna eat and not worry about it. I cant stay in this mental state I'm in. If IBS is a symptom of Celiac, then I will just have to put up with it, and stay away from spicy & fried foods.

I talked to a co-worker of mine and he's a skinney kid too. He went to a fitness trainer and that guy told him to put on weight he would have to eat SIX full meals every day. Seriously, who has the time or even the money to do that? Rediculous.

Everyone is made differently. I'm not trying to be a model on the cover of Men's Health...but I do want to gain some weight back.

Share this post


Link to post
Share on other sites

Erik,

I have to agree with Matilda...I don't think you went gluten-free for very long at all and in those few weeks you were slipping up and eating gluten. I think you'd have to be 100% gluten-free if you expect to see ANY improvement. I've gained over 10 lbs. now but if I mistakenly ate gluten a few times I'd easily lose it all over again as I'm not nearly all the way healed yet.

Share this post


Link to post
Share on other sites

I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.

You were never completely gluten free what I could tell because you were slipping up alot.

Most doctors are worthless when it comes to celiac.

If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.

Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.

The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.

Share this post


Link to post
Share on other sites


Ads by Google:


Guest DanceswithWolves
I agree, and it takes a while to see results from it as well. Some people don't see results for months. I saw improvement after 3 but was not really back to normal until 8 months.

You were never completely gluten free what I could tell because you were slipping up alot.

Most doctors are worthless when it comes to celiac.

If you want to gain weight and get better you need to at least try the diet...you need to be 100% gluten free for a while though...its all or nothing and no in between..so pretty much just does not cut it...it has to be 100% or it's just like not following the diet @ all.

Celiac is commonly misdiagnosed for IBS. IBS is basically them saying they do not know what is wrong so they will give you some meds to take for it.

The meds you are on may help ease the symptoms but the underlying problem will still be there until you take care of it.

<{POST_SNAPBACK}>

All I know is this: The doctor wants me to eat normally and to put some weight back on. I've had members on this board tell me that I have to have at least 3 months of Gluten in my system before I get checked for celiac disease. I have til October 11th to attempt to put weight back on, and then he will suggest another blood test for celiac disease. I still haven't received all my results back from the other blood tests. I will know that on Sept. 27th. I will tell my regular doctor when I go back that the Gastro doc told me to just eat normally, even if it makes me sick.

Share this post


Link to post
Share on other sites

email your stupid drs a link to this discussion so they can see for themselves your struggle to get healthy and how they're not helping. :o

Share this post


Link to post
Share on other sites
I cant stay in this mental state I'm in.

<{POST_SNAPBACK}>

I hope you find some resolution soon. Please be aware that mood altering drugs can be very dangerous for celiacs, you sound real depressed and your injesting two, the prozac and the valium that is mixed with the antispasmotic in the clidinium. Also celiac disease itself can cause serious depression, being gluten-free negates the need for medication. As someone who did not show up on tests for years and years and years and has two young adults, one who has permanant extensive scars from cutting while on prozac and almost committed suicide I have to bring this up to you. Please be careful and try to keep in mind that any depression is something that will pass. I also vote for the try the diet strictly for a couple months, why American doctors want us to poison ourselves to prove something that can be 'proved' by strict dietary compliance is beyond me. $ maybe?

Share this post


Link to post
Share on other sites
Guest DanceswithWolves

Fear not.

I ain't going out like that.

It's kinda weird, I can tell when the Prozac is kicking in because there's this sudden "rush" I get. Maybe 3 seconds and it's gone. I think it's the serotonin flowing. :)

Hard to describe but I am familiar with the feeling.

Trust me, I doubt I'm going to go back to that same Gastro doc. He told me I have IBS and I should just eat whatever I want and not worry about it all. Try to put some weight back on. Now, let me get this straight, doc....you WANT me to eat food like donuts, bread etc., even though all those wrong foods are what gave me IBS in the first place?

Right. For instance, tonight at work I thought, ok try Burger King. Maybe a chicken tender crisp sandwich. Well, sure, it tasted great going down. But within 45 minutes not only was I belching really loud, but my whole back started to ache. Now, I realise I have been on my feet all day....but other nights when I eat maybe a frozen salmon fish dinner with rice...I'm fine.

I guess most of you board members are right. I either admit to myself that I am a celiac and go totally Gluten-Free without the doctor's opinion, or I continue to eat everything gluten; put up with the symptoms, and then get re-tested in three months just so I can have that little paper stating that I have celiac disease.

If I go back to that same Gastrologist still weighing either the same or less...maybe then it will sink into his med-school head that there is something wrong with me besides IBS. :angry:

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
0

  • Who's Online   7 Members, 0 Anonymous, 263 Guests (See full list)

  • Top Posters +

  • Recent Articles

    Christina Kantzavelos
    Celiac.com 07/20/2018 - During my Vipassana retreat, I wasn’t left with much to eat during breakfast, at least in terms of gluten free options. Even with gluten free bread, the toasters weren’t separated to prevent cross contamination. All of my other options were full of sugar (cereals, fruits), which I try to avoid, especially for breakfast. I had to come up with something that did not have sugar, was tasty, salty, and gave me some form of protein. After about four days of mixing and matching, I was finally able to come up with the strangest concoction, that may not look the prettiest, but sure tastes delicious. Actually, if you squint your eyes just enough, it tastes like buttery popcorn. I now can’t stop eating it as a snack at home, and would like to share it with others who are looking for a yummy nutritious snack. 
    Ingredients:
    4 Rice cakes ⅓ cup of Olive oil  Mineral salt ½ cup Nutritional Yeast ⅓ cup of Sunflower Seeds  Intriguing list, right?...
    Directions (1.5 Servings):
    Crunch up the rice into small bite size pieces.  Throw a liberal amount of nutritional yeast onto the pieces, until you see more yellow than white.  Add salt to taste. For my POTS brothers and sisters, throw it on (we need an excess amount of salt to maintain a healthy BP).  Add olive oil  Liberally sprinkle sunflower seeds. This is what adds the protein and crunch, so the more, the tastier.  Buen Provecho, y Buen Camino! 

    Jefferson Adams
    Celiac.com 07/19/2018 - Maintaining a gluten-free diet can be an on-going challenge, especially when you factor in all the hidden or obscure gluten that can trip you up. In many cases, foods that are naturally gluten-free end up contain added gluten. Sometimes this can slip by us, and that when the suffering begins. To avoid suffering needlessly, be sure to keep a sharp eye on labels, and beware of added or hidden gluten, even in food labeled gluten-free.  Use Celiac.com's SAFE Gluten-Free Food List and UNSAFE Gluten-free Food List as a guide.
    Also, beware of these common mistakes that can ruin your gluten-free diet. Watch out for:
    Watch out for naturally gluten-free foods like rice and soy, that use gluten-based ingredients in processing. For example, many rice and soy beverages are made using barley enzymes, which can cause immune reactions in people with celiac disease. Be careful of bad advice from food store employees, who may be misinformed themselves. For example, many folks mistakenly believe that wheat-based grains like spelt or kamut are safe for celiacs. Be careful when taking advice. Beware of cross-contamination between food store bins selling raw flours and grains, often via the food scoops. Be careful to avoid wheat-bread crumbs in butter, jams, toaster, counter surface, etc. Watch out for hidden gluten in prescription drugs. Ask your pharmacist for help about anything you’re not sure about, or suspect might contain unwanted gluten. Watch out for hidden gluten in lotions, conditioners, shampoos, deodorants, creams and cosmetics, (primarily for those with dermatitis herpetaformis). Be mindful of stamps, envelopes or other gummed labels, as these can often contain wheat paste. Use a sponge to moisten such surfaces. Be careful about hidden gluten in toothpaste and mouthwash. Be careful about common cereal ingredients, such as malt flavoring, or other non-gluten-free ingredient. Be extra careful when considering packaged mixes and sauces, including soy sauce, fish sauce, catsup, mustard, mayonnaise, etc., as many of these can contain wheat or wheat by-product in their manufacture. Be especially careful about gravy mixes, packets & canned soups. Even some brands of rice paper can contain gluten, so be careful. Lastly, watch out for foods like ice cream and yogurt, which are often gluten-free, but can also often contain added ingredients that can make them unsuitable for anyone on a gluten-free diet. Eating Out? If you eat out, consider that many restaurants use a shared grill or shared cooking oil for regular and gluten-free foods, so be careful. Also, watch for flour in otherwise gluten-free spices, as per above. Ask questions, and stay vigilant.

    Jefferson Adams
    Celiac.com 07/18/2018 - Despite many studies on immune development in children, there still isn’t much good data on how a mother’s diet during pregnancy and infancy influences a child’s immune development.  A team of researchers recently set out to assess whether changes in maternal or infant diet might influence the risk of allergies or autoimmune disease.
    The team included Vanessa Garcia-Larsen, Despo Ierodiakonou, Katharine Jarrold, Sergio Cunha,  Jennifer Chivinge, Zoe Robinson, Natalie Geoghegan, Alisha Ruparelia, Pooja Devani, Marialena Trivella, Jo Leonardi-Bee, and Robert J. Boyle.
    They are variously associated with the Department of Undiagnosed Celiac Disease More Common in Women and Girls International Health, Johns Hopkins School of Public Health, Baltimore, Maryland, United States of America; the Respiratory Epidemiology, Occupational Medicine and Public Health, National Heart and Lung Institute, Imperial College London, London, United Kingdom; the Section of Paediatrics, Department of Medicine, Imperial College London, London, United Kingdom; the Centre for Statistics in Medicine, University of Oxford, Oxford, United Kingdom; the Division of Epidemiology and Public Health, University of Nottingham, Nottingham, United Kingdom; the Centre of Evidence Based Dermatology, University of Nottingham, Nottingham, United Kingdom; and Stanford University in the USA.
    Team members searched MEDLINE, Excerpta Medica dataBASE (EMBASE), Web of Science, Central Register of Controlled Trials (CENTRAL), and Literatura Latino Americana em Ciências da Saúde (LILACS) for observational studies conducted between January 1946 and July 2013, and interventional studies conducted through December 2017, that evaluated the relationship between diet during pregnancy, lactation, or the first year of life, and future risk of allergic or autoimmune disease. 
    They then selected studies, extracted data, and assessed bias risk. They evaluated data using the Grading of Recommendations Assessment, Development and Evaluation (GRADE). They found 260 original studies, covering 964,143 participants, of milk feeding, including 1 intervention trial of breastfeeding promotion, and 173 original studies, covering 542,672 participants, of other maternal or infant dietary exposures, including 80 trials of 26 maternal, 32 infant, or 22 combined interventions. 
    They found a high bias risk in nearly half of the more than 250 milk feeding studies and in about one-quarter of studies of other dietary exposures. Evidence from 19 intervention trials suggests that oral supplementation with probiotics during late pregnancy and lactation may reduce risk of eczema. 44 cases per 1,000; 95% CI 20–64), and 6 trials, suggest that fish oil supplementation during pregnancy and lactation may reduce risk of allergic sensitization to egg. GRADE certainty of these findings was moderate. 
    The team found less evidence, and low GRADE certainty, for claims that breastfeeding reduces eczema risk during infancy, that longer exclusive breastfeeding is associated with reduced type 1 diabetes mellitus, and that probiotics reduce risk of infants developing allergies to cow’s milk. 
    They found no evidence that dietary exposure to other factors, including prebiotic supplements, maternal allergenic food avoidance, and vitamin, mineral, fruit, and vegetable intake, influence risk of allergic or autoimmune disease. 
    Overall, the team’s findings support a connection between the mother’s diet and risk of immune-mediated diseases in the child. Maternal probiotic and fish oil supplementation may reduce risk of eczema and allergic sensitization to food, respectively.
    Stay tuned for more on diet during pregnancy and its role in celiac disease.
    Source:
    PLoS Med. 2018 Feb; 15(2): e1002507. doi:  10.1371/journal.pmed.1002507

    Jefferson Adams
    Celiac.com 07/17/2018 - What can fat soluble vitamin levels in newly diagnosed children tell us about celiac disease? A team of researchers recently assessed fat soluble vitamin levels in children diagnosed with newly celiac disease to determine whether vitamin levels needed to be assessed routinely in these patients during diagnosis.
    The researchers evaluated the symptoms of celiac patients in a newly diagnosed pediatric group and evaluated their fat soluble vitamin levels and intestinal biopsies, and then compared their vitamin levels with those of a healthy control group.
    The research team included Yavuz Tokgöz, Semiha Terlemez and Aslıhan Karul. They are variously affiliated with the Department of Pediatric Gastroenterology, Hepatology and Nutrition, the Department of Pediatrics, and the Department of Biochemistry at Adnan Menderes University Medical Faculty in Aydın, Turkey.
    The team evaluated 27 female, 25 male celiac patients, and an evenly divided group of 50 healthy control subjects. Patients averaged 9 years, and weighed 16.2 kg. The most common symptom in celiac patients was growth retardation, which was seen in 61.5%, with  abdominal pain next at 51.9%, and diarrhea, seen in 11.5%. Histological examination showed nearly half of the patients at grade Marsh 3B. 
    Vitamin A and vitamin D levels for celiac patients were significantly lower than the control group. Vitamin A and vitamin D deficiencies were significantly more common compared to healthy subjects. Nearly all of the celiac patients showed vitamin D insufficiency, while nearly 62% showed vitamin D deficiency. Nearly 33% of celiac patients showed vitamin A deficiency. 
    The team saw no deficiencies in vitamin E or vitamin K1 among celiac patients. In the healthy control group, vitamin D deficiency was seen in 2 (4%) patients, vitamin D insufficiency was determined in 9 (18%) patients. The team found normal levels of all other vitamins in the healthy group.
    Children with newly diagnosed celiac disease showed significantly reduced levels of vitamin D and A. The team recommends screening of vitamin A and D levels during diagnosis of these patients.
    Source:
    BMC Pediatrics

    Jefferson Adams
    Celiac.com 07/16/2018 - Did weak public oversight leave Arizonans ripe for Theranos’ faulty blood tests scam? Scandal-plagued blood-testing company Theranos deceived Arizona officials and patients by selling unproven, unreliable products that produced faulty medical results, according to a new book by Wall Street Journal reporter, whose in-depth, comprehensive investigation of the company uncovered deceit, abuse, and potential fraud.
    Moreover, Arizona government officials facilitated the deception by providing weak regulatory oversight that essentially left patients as guinea pigs, said the book’s author, investigative reporter John Carreyrou. 
    In the newly released "Bad Blood: Secrets and Lies in a Silicon Valley Startup," Carreyrou documents how Theranos and its upstart founder, Elizabeth Holmes, used overblown marketing claims and questionable sales tactics to push faulty products that resulted in consistently faulty blood tests results. Flawed results included tests for celiac disease and numerous other serious, and potentially life-threatening, conditions.
    According to Carreyrou, Theranos’ lies and deceit made Arizonans into guinea pigs in what amounted to a "big, unauthorized medical experiment.” Even though founder Elizabeth Holmes and Theranos duped numerous people, including seemingly savvy investors, Carreyrou points out that there were public facts available to elected officials back then, like a complete lack of clinical data on the company's testing and no approvals from the Food and Drug Administration for any of its tests.
    SEC recently charged the now disgraced Holmes with what it called a 'years-long fraud.’ The company’s value has plummeted, and it is now nearly worthless, and facing dozens, and possibly hundreds of lawsuits from angry investors. Meantime, Theranos will pay Arizona consumers $4.65 million under a consumer-fraud settlement Arizona Attorney General Mark Brnovich negotiated with the embattled blood-testing company.
    Both investors and Arizona officials, “could have picked up on those things or asked more questions or kicked the tires more," Carreyrou said. Unlike other states, such as New York, Arizona lacks robust laboratory oversight that would likely have prevented Theranos from operating in those places, he added.
    Stay tuned for more new on how the Theranos fraud story plays out.
    Read more at azcentral.com.

  • Forum Statistics

    • Total Topics
      110,490
    • Total Posts
      950,846
  • Member Statistics

    • Total Members
      81,100
    • Most Online
      4,125

    Newest Member
    Viha Panchal
    Joined
  • Popular Now

  • Topics

  • Posts

    • With celiac we commonly have issues absorbing Magnesium, this can cause constipation...the kind that even a entire package of exlax does nothing for (been there). You need Natural Vitality Calm magnesium Powder, you can get it on amazon, start off with 1/4tsp (1-2g) in a tall glass of a warm beverage, raise the dose by 1/4tsp (1-2g) a day til you get loose stools then back it down that much.

      The bloat could be the constipation or it could be something else. What is your diet?
      We suggest a whole foods only diet starting off and you need to remove dairy, and oats, (the enzymes to break down dairy come from your villi which are damaged/destroyed by celiac and 10% of celiacs also react to oats) ]If your eating a ton of gluten free processed foods and not a whole foods diet your probably loading up on tons of starches and sugars. With celiac we are prone to intestinal issues like Candida, and SIBO. You can get tested for these or look at going to a low carb diet and seeing if the bloating stops after a few weeks. The Keto diet works great starting off as most recipes are gluten free, grain free, and very low carb so it helps with bloat and inflammation.
    • Thanks for the info and tips on beers. I don't drink a lot, but am always interested in options. I'll still have my occasional Guinness, as I love it, and have never felt anything but a warm glow after drinking one. As always, and with anything with gluten, your mileage may vary, just as mine does. Thanks again!
    • That's a good idea! When he was walking out of the exam room I told him that when it came time for him to need a doctor, I hope he got one with more compassion, understanding and a better bed side manner than he had...he just looked at me and walked out 🙄 As for dealing with blaming my weight and wanting me to be on happy pills, I assumed it was just me that was being told crap like that and that maybe my doctor was right. It wasn't until I stumbled across this site that I realized it wasn't just me dealing with those kinds of comments/crappy care from the doctor. 
    • Haha not sad at all that you wanted to congratulate me on the diagnosis...as odd as it sounds, I was thrilled lol, I finally had answers! I'm sorry you've had to go thru what you've gone thru. Honestly, it took me years to find that voice and be vocal about my care...I always assumed the doctor was right...you know, since they're the doctor and all lol.  The only reason I knew I needed to keep consuming gluten for my testing is because when looking up the symptoms of celiac and testing done for, everything I read kept saying you need to be consuming gluten for the test. If I had stopped eating it before testing, there's no way I would have reintroduced it into my diet, I would have just gone on assuming I had at least a gluten sensitivity and left it at that. But I'm stubborn and I wanted answers. You mentioned licorice being one of your culprits...I used to eat red vines all the time, never looking at what was in them, so I never assumed that they were giving me problems...I was both shocked and sad when I realized I could no longer eat them lol! 
    • I just saw the ear doctor though and he didn't say anything  
  • Blog Entries

  • Upcoming Events