MsCurious

Today I got a call ... there was a cancellation... did I want to be seen? YES! So I went to this GI I had never met or heard of... within our HMO group. He was condescending, pompous, egomaniacal, insensitive, and obstinate! He talked AT ME ... not with me, and as I told him my history, and listed my symptoms and family history, etc. He said, you don't have celiac disease you have IBS! OMG!!!! He barely would listen to me! Then I said, nobody has told me what my test results are, and I've requested them 3 times. He ignored me. Finally, with much persistence (and me in tears...which I NEVER do... especially in a doctors office when I'm trying to present my case... as if I'm on trial!) he agreed to pull up my HLA test results. Showed me this:

The patient has one of the HLA-DQ variants associated

with celiac disease.

More than 97% of celiac patients carry either

HLA-DQ2(DQA1*05/DQB1*02) or HLA-DQ8(DQA1*03/DQB1*0302)

or both. However 39% of the general U.S. population

carry these HLA-DQ variants, as a consequence, the presence of HLA-

DQ2 or DQ8 or both variants is not per se diagnostic of celiac disease.

HLA-DQ2(DQA1*05/DQB1*02) Positive

HLA-DQ8(DQA1*03/DQB1*0302) Negative

HLA-DQA1* 01

HLA-DQA1* 05

HLA-DQB1* 0201

HLA-DQB1* 0603

Then he said, people with celiac are skinny... you don't have Celiac Disease... you have IBS. I said I DO NOT have IBS and not all celiac patients are skinny!! He looked at me like a pompous @$$ and said, what do you think you have! I said, possibly celiac and at the very least gluten sensitivity. Then he said, no you don't people with IBS can't eat raw vegetables or salads .. they have trouble digesting them... you have IBS. I said I love salads and they don't bother me. He said, well what does bother you? I said, pasta! WHAT A JERK! Anyway, after I summarized my symptoms one more time, and told him his statistics were outdated, (he was spewing things like 1 in 350 people have celiac disease... current stats are 1-133) he finally said, well I'm not doing a celiac panel on you, and I don't do vitamin levels. I was shaking by that time! Then he finally said, well I'll do a biopsy on you just to prove to you that you don't have celiac. OMG!

I'm terrified to have this jerk cut into me! Am I over reacting? I want to cancel my appointment which is this Monday and see a different doctor. My family thinks I should.

Also, can anyone tell me what those bottom four numbers are for... what they mean? I have no clue.

  On 2/18/2011 at 9:00 PM, mushroom said:

Thank you for this link. I found one article of particular interest (no, have not read them ALL

Open Original Shared Link (with some editorial comment)

Hi Mushroom,

You are so very welcome! It makes me happy that I could actually find something useful for you and others. Everyone has been so helpful to me! It's nice to be able to contribute in some small positive way.

Thanks Jenn!

  On 2/23/2011 at 11:15 PM, Igg postive said:

I hope you get the answers soon. I had no clue that it might be Celiac until my Endo figured it out. I remember him asking Celiac type questions and at the time I had no clue where he was leading. I was happy he called me to tell me what the Celiac Panel pointed to. He warned me then not to go on a Celiac diet because the GI doctor would want to most likely take biospys. That has been the hardest. When I look at the wheat containing food it is like looking at poison. It is hard to eat it knowing it is most likely making me sick. I talk to a woman that heads up the local Celiac group . She said that I will be happier knowing for sure (from the biospys)that it is Celiac. So I wait for my appointment.

When you get your test data I hope you get the information you are looking for. How did you find out that it might be Celiac in your case?

God Bless you and take care.

You know, its probably a very typical story. One of connecting the dots. I feel kind of like an idiot that I just accepted feeling crappy for decades, but I attributed all the chronic digestive stuff to "being like my dad" ... who I think also may have celiac disease or NCGS. And the fatigue and headaches etc, I attributed to being a single mom, working full time, owning a home and having to do everything from cooking, cleaning, laundry, paying bills, taking care of my child to mowing, snowblowing, cleaning gutters, raking leaves, keeping up with son's hockey, boy scouts, football, baseball, tennis, swimming, piano lessons...etc. I just always figured I was burning the candle at both ends... trying to "do it all"... and that's why I felt really crummy all the time.

THEN.... in October...last fall I had a really severe back pain... thought I must have twisted wrong when lifting a box of copy paper or something. A few days later, a horrible rash and the pain felt like I had been stabbed through the back and out my chest with a sword. Finally after a brutally painful week, the doctor diagnosed shingles. That took 5 weeks to heal ...which I guess is normal. I asked my doctor straight out... "Why did I get shingles? What causes it to strike some people and not others when the majority of the population has had chicken pox?" His reply was... "Generally, its rears its ugly head, where there is a weakened immune system." I said, "Well I don't have a weakened immune system!" And he replied, "Well it happens sometimes to people who don't." and that was the end of the conversation.

Holidays came and went...and I was feeling worse and worse. Constant headaches, sooooooo fatigued... just didn't bounce back after the Chicken Pox Part Two. So in January... I saw an IBS commerical on TV for some miracle product...(yeah right) but it got me to thinking... why the heck do I have to put up with this constant "D" and feeling so awful all the time, so I googled IBS, thinking maybe that's what I had... same ole, same ole with a new-fangled name or something. Surprisingly, I kept reading references to Celiac Disease...and the more I read the more I thought... holy crap...that sounds like me!

It was sort of a "connect the dots" thing. After reading about celiac, and gluten intolerance I thought... OMG, diarrhea, bloating, gas, tummy pains, cramping, unexplained headaches that would last for 3-6 days, fatigue, joint pain, always bruising easily...never knowing where I got them, eczema runs in the family, as do many allergies and asthma... severe anemia at age 19-20 where I would just about black out walking up steps, and the diagnosis of ulcerative colitis at about 20... that "seemed to get better", and lactose intolerance for 30+ years, oh and lets not forget chronic sore throats... more common to have one than not.

Then it occurred to me... three years ago I had been in a vitamin D study, and when they ran the tests they said, you virtually have no vitamin D... level was 15 and 50-100 is normal range. At the time they were saying they thought it was due to lack of sunlight in northern climates blah blah. Then I thought about the times my son begged for mac n' cheese and I'd make it and I'd get sicker than a dog like the next day... and think...sheesh, I wonder if they made the macaroni noodles in Mexico or something, and because of the water there ... monezuma's revenge! LOL ... Good grief, I didn't have any clue back then. After thinking for a while, another light bulb went on... OMG, ... shingles!.... compromised immune system!!!! It all started making sense... so I contacted my doctor and he ordered TTG IgA and IgG... results: negative. So he referred me to GI Dept and I go in on March 1st... so I'm holding on ... suffering through the gluten in hopes that they will figure it out. And if they don't, I'm going gluten free with or without doc diagnosis. So sick and tired of being sick and tired. It has stunted my life enough... its time for me to take control of it... not have it control me. So, there you are... that's my story and I'm stickin' to it. Sorry you asked now...aren't ya? LOL

  On 2/23/2011 at 12:29 PM, ravenwoodglass said:

I personally have a real problem with the idea that 98% of celiacs carry those 2 associated genes. The reason being is that they have not routinely tested all blood and biopsy proven celiacs to see what genes they do carry. IMHO it is very likely that there are a lot more than 2% of us that carry one of the other up to 27 associated genes. Of the 4 diagnosed in my family, 3 by positive blood tests, one by positive blood and biopsy, and myself by elimination and 2 challenges, the second of which almost killed me, not one of us had them order a gene test at diagnosis. I had mine done 5 years after diagnosis because the blood and biopsy positive family member had their gene test done and was told she never was celiac and all the tests and improvement on the diet was false...because she didn't have Dq2 or Dq8. That made me wonder what gene I carry. It also depends on what country you live in what genes are considered celiac associated. Mine while not considered a celiac gene here in the US is considered one in the Far and Middle East. There is a lot to be learned about celiac and about gene testing and gene testing IMHO should not be used to firmly rule celiac out.

Yep... I'd say your family carries genes that fall into the group that does have celiac disease but doesn't fall in the "typical 98%" ..but I think, like you... they isolated that gene in so many people of european ancestry.. specifically UK, Sweden Ireland...and those areas... so that became their focus. I think there are a LOT of genetic links that they have yet to identify, but hopefully they will keep at it, so people who really DO have it, aren't made to feel crazy or like hypochondriacs or something. I have read of double DQ1 and Double DQ9 and DQ5 &DQ7 pairing that have all the same symptoms, and react extremely well to gluten-free... and really sick with CC. So I think they are really in infant stages of figuring out the genetics associated with celiac disease and gluten intolerance.

  On 2/23/2011 at 3:21 PM, Hammod said:

So I'm new here. I've suspected that I have Celiac/gluten intolerance for over a year now. My symptoms however started about 2 years ago with Bouts of Diarhea and Constipation. Bloating,Severe indigestion/heartburn. Muscle and Joint pain, extreme fatigue, psorasis, migraines within an hour of having a beer, Scabby rashes on the back of my legs. So I did what I do and I googled my symptoms and Celiac came up. I read the info on it and I decided I would try a gluten free diet. I felt better within two weeks! I kept to the gluten free diet for about 6 months even though in the back of my head I kept asking myself "what if that wasn't it? What if it was just a coincidence?" So 4 months ago I slowly started to introduce gluten again and at first all I noticed really was being bloated and a little tired. As I started to consume more I started to get the same symptoms back again. For the past month I have dealt with fatigue, severe heartburn to where I almost throw up, stomach pain, diarhea/constipation etc... So I was going to go back to the gluten-free diet and a lady I work with who has Celiac said "No - now is the time to get tested!" So I decided I would although I hate going to see doctors so I rarely go. I made an appt. with a GI

He was awful! He treated me like I was stupid and don't know my own body. LIke I was making it up. He kept questioning my heartburn and saying he didn't understand what I was feeling when I said I had heartburn. Uh well you know a burning sensation moving up through my chest and into my throat. duh... Then after he checked me out he said he really thinks that I have IBS and that he'll give me some medicine to help with the IBS and another medicine to help with the heartburn. And after I told him I had an aunt and a cousin who have Celiacs he agreed to do a blood test and a endoscopy. I still felt awful about how he acted towards me.

So I get home with my prescriptions and being me again I google the drugs to see what they are about and hmmm...he did prescribe me a medicine to help with the heartburn, but he also prescribed me an antidepressant! Really so now I just have a nervous stomach and my tummy hurts from anxiety? This is why I didn't want to go to the doctor. So I had my blood test, but still waiting for the results to come back and I have an endoscopy scheduled in a few weeks. Part of me doesn't even want to go through with it because if it comes back negative I can only imagine what he will say to me then?

Regardless I am going go back to gluten free after all is said and done.

Ugh! Sorry you had to have such a bad experience with your GI! I go in for my first consultation with my new GI on the first, and I'm HOPING but not hopful of having a better experience than that. Its just a crime that they don't believe or listen to patients. I think though, that people who have never suffered with chronic symptoms like these... that they really just "don't get it"... its all text ... and words to them... they can't or don't translate it into REAL daily existence... or they would be a lot more attentive!

My regular doctor (who referred me to GI) is really nice ... but not a GI doctor, so he really didn't "get it" so much either. He also prescribed some low dose anti depressant... they sit in my medicine cabinet ... untouched. I also stopped taking my vitamin supplements, except Vitamin D an calcium, because that could do so much harm , and I already know my vitamin D was nearly non-existent (15 when it should be between 50-100). BUT I am going to ask them to check B-12 and what ever others come with that.

Don't give up though! You've done the right thing getting blood drawn. I had TTG and it was negative. They did the Genetic test to see if I was in the 98% "pool" of people who have the predisposition to even getting celiac disease... and they never told me the results. Not sure if that's why he referred me to GI, or if he thinks its "IBS" the catch all for "I don't know whats wrong with you". I have read over and over about people who test negative to TTG and then have a positive DGP... so who knows.

So I am going in to the GI armed with all my "connected dots" ...and I've decided I am going to push for full celiac panel and any other food intolerance testing I can get them to do. Once the testing is over, I am going Gluten FREE.. with or without my doctor's blessing, since I already know I feel a gazillion times better gluten-free. Good luck to you and hope you feel better soon! Keep us posted on your results!

  On 2/22/2011 at 10:48 AM, Marz said:

Yes, yes it could've been the pasta. Symptoms are sometimes delayed by 2 or 3 days while your immune system is building up a response.

How long have you been "gluten light" and when is your panel being done? I'm afraid to say that even eating gluten light, the blood tests/biopsy could come back negative Do get them done, but doctors recommend 3 wheat meals a day for several weeks to ensure sufficient antibodies are being produced (That's if you've been totally gluten free).

Don't worry too much though - even if tests are all negative, you can still be gluten intolerant, and get significant relief from symptoms on a gluten-free diet. You just don't have the official celiac diagnosis, but in the long run it's a slip of paper, what's it going to change?

I couldn't wait to go gluten-free either really, it was a huge relief after the tests were done. Honestly, when I was eating gluten I also thought I had a ton of intolerances. But I was feeling so super crap that I couldn't really tell. Once you're gluten free, the food diary will make a lot more sense and then you can see if any other foods are bugging you.

For me, egg, chicken, olives, goat cheese/milk, strawberries and nightshade plants were causing problems initially. After being gluten-free for a few months, I can eat small amounts of any without a problem (woohoo!). So don't despair, just hang in there and eat as much gluten as you can stand until tests are done.

Hi Marz,

Thanks so much for sharing your info... that gives me hope! I'm still hangin!

I just realized... I need to learn how to just quote parts of posts! Where are the lessons for that?

  On 2/23/2011 at 2:10 AM, Igg postive said:

"playing the waiting game,.... I went through (and probably still a little bit) the roller coaster of emotions, fears, self doubt, etc."

How true your words are. I have been playing the waiting game too. I can emphasis with you. I have several more weeks till I will have my biopsy. Maybe I will have some answers by then. If not I may be on to a lot of other testing to find out about my symptoms. It has been scary not knowing what is causing my symptoms. I had been trying not to think of the scary reasons but one can not help thinking about them. You are doing the right thing, thinking how to approach communicating with your doctors. It should be a partnership with them. They listen to you and you listen to them and then both come up with an avenue of attack on our symptoms. It just seems so long the waiting for the next appointment or the next test. It is nerve racking let alone the physical problems we are putting up with.

Which doctor will your seeing next?

Hi Igg... so nice to meet you! Thanks for your reply... its nice to talk with someone in the same shoes. I just got off the phone with GI Department about an hour ago... FINALLY! They called and scheduled a consultation with GI doctor.

My regular doctor referred me with a very strange note. He didn't give me the results of my genetic test, but said the results were in the mail. Then he said he had referred me to GI and they would be calling to set up an appointment, which finally happened today. Then he said (in his note after telling me results were being mailed) that this test was not the test for celiac. LOL

I have no idea how to read that. Don't know if I have one of the markers and he wanted me to know that doesn't diagnose celiac (which I already knew)... OR if he was trying to tell me I didn't have genetic markers so I don't have celiac for sure. So hopefully tomorrow I will get that in the mail and at least know what my DQ markers are... not that it will tell me much, other than if I am in the pool of people who can get celiac. Although from what I understand that only covers 98 percent ... or something so there are other markers that are associated to Celiac, in a very very small population. I feel like I'm rambling! I know what I'm trying to say, but not sure its coming out right.

It sounds like you're a few steps ahead of me in the process, but its really nice to talk with someone who has the same concerns that I do. I feel like everybody around me just think I'm imagining things, or exagerating... even though 3 of them exhibit symptoms themselves (digestive issues, skin rashes etc.). My husband is being very supportive, but really doesn't understand. Don't think he's ever had a tummy ache in his entire life... let alone the "big D".

He had 5 days off, and we ate exactly the same foods the entire 5 days and I got sicker than a dog, but he was perfectly fine! I had a really really bad reaction ... I think to eating pasta, and two days later.... I was in really bad shape. So I think that made him realize that something I'm ingesting is toxic to my system, so that helped a little with understanding on his part.

I hope you get the answers you are seeking with your biopsy. Good luck with that, and keep me posted! I'm interested in how you do!

  On 2/22/2011 at 11:52 PM, burdee said:

I did 3 different versions of the ELISA (enzyme linked immunosorbent assay) blood test for IgE (immediate reaction) and IgG (delayed reaction) food allergies. My test results were also processed by US Biotek, which my doc used because they use good quality control standards in their lab. (So their results are reliable.) Those 3 panels showed that I react to cane sugar, eggs, vanilla and nutmeg. I had previously taken Enterolab stool tests which indicated sensitivities to gluten, casein and soy. So I had stopped consuming those 3 foods long before I took the ELISA test. Therefore I showed no reaction on the ELISA test to the (reaction) foods I no longer ate.

I needed 3 different panels of ELISA, because after the first 100 food panel which indiated sugar and egg sensitivities, I was still reaction to something. Rather than just guess, I took the other 2 ELISA panels (vegan additional foods and herbs and spices), which finally showed that I reacted to vanilla and nutmeg.

All the foods, for which my test results indicated strong reactions, matched my experiences with symptoms. Also when I abstained from any of those foods for a while and later accidentally consumed one of those foods, I reacted very strongly. So I trust that my test results are accurate.

Thanks so much for your response burdee! Did your doctor order all of the tests, or did you do them on your own? Thanks again!

  On 2/22/2011 at 1:24 PM, ravenwoodglass said:

They actually do have the newest test DGP in there for both IGA deficient folks and those not IGA deficient. So they are up to date. The only thing I don't agree with it that they suggest the gene typing as a part of the first step. Too often if the genes DQ2 orDQ8 are not present they stop looking and say nope can't be celiac. They are not the only major hospital to do that though but if they had done that (gene testing for diagnosis) with me I wouldn't be here.

Thanks for posting the link.

Thank you, Raven You continue to be such a supportive and helpful resource on here, and for that I thank you so much.

  On 2/18/2011 at 7:36 PM, Takala said:

Diet may get rid of the headaches without the anti depressants. Beware of such, they are addictive and cannot be gone off of an on without care, plus some of them also have restrictions as to what you can EAT at the same time you are taking them.

By coincidence many of the side effects of said drug can mimic a gluten reaction (drowsiness, nausea, dizziness, insomnia) so if you add it at the same time you go gluten free you may mask your reaction to going gluten free.

From my experience it works best to eat simply as possible at first and then add in new foods slowly to gauge your reaction. Meat, vegetables, fruit, nuts, good oils, maybe some rice.

Anything that goes into your mouth needs to be gluten free.

To find if an item is gluten free, google gluten free name of item and it will usually pull up a discussion where you can then find the latest manufacturer's info. Beware old info as this tends to change.

I don't use gluten bearing cosmetics, but this is because I have longer hair and women tend to use a lot more of this stuff anyway and we tend to not keep our fingers away out of our hair. No way do I want to be spreading residues from hair conditioners around. My skin is super sensitive and my eyes will weep and blur if I use makeup that has it. ( I also have a dog with a wheat allergy, not the same thing, but you never want to use human shampoo with wheat or oats on an allergic dog- really a bad idea ) My husband glutenned me a few times by using hand lotion, and then bare hands on ice cubes and while making salads, which is when we switched him over to gluten free stuff also.

Others report that they have no problems with topicals, so this may not affect you.

OMG.... I never thought of that! But I have the same thing with makeup, and could never figure out why it would make my eyes water, etc. That could be it!

I have heard about tests that tell you what foods you have a high intolerance to, and those that don't bother you. Ultimately, that is the information I really am interested in. I don't really care what label is stuck on it or me, just want to feel better.

This seems like an invaluable tool! Has anyone had experience with this? Know what the tests are called? Anything? Seems like if there is such a test, all doctors should test patients for this, and hand them a "road map" of do's and don'ts to feel better all the time!

Thanks in advance for your replies.

  On 2/22/2011 at 6:14 PM, salexander421 said:

Found this interesting article about lymphocytes

Open Original Shared Link

Thanks for the link, Alex. It was very interesting. The more knowledge the better! And ditto on the thread topic. Seems to be common.

Been feeling lousy lately as usual but today, sicker than a dog. I've had a headache for 5 going on 6 days with no break, and been extremely tired. Low grade sore throat which I have more often than not and trying to figure out what triggered such a terrible day today. Tummy ache, huge bloating (looks like 6 months pregnant! BLAH!).... cramping, nausea "Big D"4-5 times... gas... just generally feeling horrible! One of those days that you hope you never ever have again. I have been trying to keep a food diary, and I'm so confused what could be the trigger.

I did have wheat pasta Saturday night, and have been so bloated and tired and miserable since then, but the "D" didnt' start until this morning... could it have been that? I have always tended to stay away from things that seem to make me feel yucky..sort of subconciously, and have been not eating much gluten, but trying to keep some in my diet until the FULL celiac panel is run, but don't want to! I wish so bad I could just go gluten-free and see if that's it, but have any of you ever found that its OTHER intolerances that make you feel the same way? Yeast? Fructose? or do those make you feel different? Still confused, still miserable, still wishing I could go gluten-free, but hopefully can get in to see the GI soon. They were supposed to call, after Doc referral but with holiday, no word yet. Hopefully, tomorrow. Any tips or stories of similar would help! Thanks!

  On 2/21/2011 at 11:27 PM, WheatChef said:

Oh hey look, they're still using the TTG test as the main one... I remember a time when I used to think the Mayo Clinic knew what the hell they were doing. They're no better off than the IOM, a great place to get your information if you don't care about any studies that have taken place in the last decade or so.

That was as of April 2010. Mayo is pretty in-touch with current studies and research, as you can see if you bother to read about current research, they collaborate with doctors in UK, Sweden, and many other places.

If there is something more current, my apologies for not knowing, but I, like many others here, are still searching for answers and educating ourselves about what is necessary to get where we need to be, ie: what tests to expect or to ask for. This is better info than none IMHO.

As far as the TTG... they do that one first because of high sensitivity. As you can see, they move on from there. If you have better information, please post, if not.. your rant was really a meaningless attack. We are just trying to help each other out here.

Hi everybody,

I'm still here... still playing the waiting game, but things are progressing forward. I went through (and probably still a little bit) the roller coaster of emotions, fears, self doubt, etc. But I've been doing some really heavy duty research, as I'm sure most of you have and I've decided on my plan of attack.

1. No more self doubt... trying to justify symptoms and telling myself I must be crazy... this couldn't happen to me.

2. Made list of all symptoms and a timeline of events that I feel have been significant to a diagnosis of celiac, or gluten intolerance... or maybe even some other intolerances. (I'm not ruling ANYTHING out after doing a quiz thing that indicated I could have fructose and yeast intolerance as well... something I hadn't considered previously). Plan to take that list with me to GI, so I don't forget things that will help them diagnose what ever is wrong with me.

3. Following up with GI that my doctor referred me to, and will push hard for FULL celiac panel, as well as panel that identifies other food intolerances. Not sure what the name(s) of the test(s) would be, but I know they are out there.

4. Determined to let the GI know right up front, things are NOT normal, there IS a cause for this stuff, and I want answers, not the run around. Tests, then results, then action to resolve (diet change). I expect ahead of time that GI WILL refer me to a nutritionist/dietician... and I will push for that as well.

5. Will exhaust all options until I get an answer and FEEL BETTER... since that is my goal. I don't care if they say I have celiac, or gluten intolerance, or fructose intolerance, or yeast intolerance or all of the above... as long as it can be identified concretely so that I have tools to work with. (knowing my intolerances... which they DO have tests to identify).

Now that I have myself pulled together, and know what I need to do for me, I thought I'd post something that could be very helpful to those of you who, like me, had no clue what tests you should be getting. This is a link to the Mayo Clinic recommended cascade to diagnose/rule out celiac as of April 2010:

Open Original Shared Link

Good luck to you all, so many stories on here all repeat each other, over and over and over again. I just wish EVERY doctor would take half an hour and just read through the stories. They would be shocked to see the consistencies, and frustrations of trying to get a diagnosis for these issues. This site has been a godsend for information, hope, support, and kind words. If I can do the same for just one person, that will make me happy.

  On 2/18/2011 at 9:23 PM, salexander421 said:

Came up as a broken link, wouldn't let me access

I reposted the link...and it works for me. Hopefully it will work for everybody that's interested.

  On 2/15/2011 at 10:50 PM, crazycanuck36 said:

Well I don't know whether to be excited or nervous because I have another consult with a different gastro doc, who is going to give me a second opinion. He doesn't like to do that, but I think he is curious as to how someone can test pos. for ttg while on gluten and negative while off gluten, but not carry either DNA gene that links me to Celiac. I tried to explain to the secretary that there are 9 new genes found in Sweden that can be indicators of Celiac disease, and I hope because he has been doing this for years instead of months like my other gastro, maybe he has seen more and is more open minded than my first one, who just thinks I am crazy. Why must the doctors treat us as if we are hypochondriacs when the symptoms are there, since childhood nonetheless, and some of the tests are conclusive? It is frustrating..but I am hoping for the best!!

Can you link that Swedish study... or tell me where I can find it? I'm interested in reading about the genetics.

Hope this information might answer some questions people may have:

Open Original Shared Link

  On 2/17/2011 at 10:13 PM, Financialman said:

In my first year of being gluten free I felt like hell. Tired, nausea the usual stuff. I got rid of the tired feeling by exercising more, taking supplements, and especially vitamin b-12, shots or drops. Once my gut and I adjusted to each other things have improved immensely. Check with your doctor and see what can be down. These things may not work for everyone but you won't know until you try.

Okay I had a little time this morning, so I searched around and found this article that may answer some questions for those of you who are on gluten free diets, but still don't feel well. This may help you understand why you might not feel well.

Histopathology. 2010 Nov 3. doi: 10.1111/j.1365-2559.2010.03680.x. [Epub ahead of print]

An update in the diagnosis of coeliac disease.

Walker MM, Murray JA.

Department of Histopathology, Imperial College London, St Mary's Hospital, London, UK Mayo Clinic, Rochester, MN, USA.

Abstract

Walker M M & Murray J A
(2010) Histopathology An update in the diagnosis of coeliac disease Coeliac disease is increasing in prevalence, which is currently estimated at one in 100 of the population and may occur de novo in adults. The diagnosis requires a joint clinicopathological approach; the recommended first-line test is serology with immunoglobulin A (IgA) tissue transglutaminase and IgA endomysial antibodies. These serological tests show high levels of sensitivity and specificity, but biopsy is the gold standard to confirm the diagnosis. It is important that both tests are performed before the introduction of a gluten-free diet. Although the classical histopathology changes of coeliac disease with partial or total villous atrophy are well recognized, the pathology classification of coeliac disease is changing, with recognition that coeliac disease may show minimal pathology (normal architecture and an intraepithelial lymphocyte count/100 enterocytes ≥ 25). This entity is also described as lymphocytic duodenosis, and recommendation of follow-up serology testing is paramount in this condition. Follow-up of patients with coeliac disease is warranted, as normal serology does not predict mucosal recovery. Failure to heal predicts risk of progression to refractory coeliac disease and malignancies. Refractory coeliac disease occurs in 1-2% of patients and this diagnosis requires a combined clinical and histopathology approach with immunocytochemistry.

This is a MAYO CLINIC Video HotTopic lecture, specifically directed to physicians, not the general population.

Be careful in watching this video and trying to understand it without medical knowledge. I misunderstood when I first saw this and confused the TTG with Gliadin IGA and Gliadin IGG tests. The second two (not the TTG) have been replaced with DGP, as it is a newer and better test, if I'm understanding the video correctly. I had to watch it a couple of times and read lots of other things to understand the differences in the test names, etc. And truthfully, they're still confusing to me sometimes. But this is what researchers are telling other doctors about Celiac Disease at this point.

Please watch with CAUTION... don't try to self diagnose. Send this to your doctor if you think it will help. That's what I did, and he thanked me. This answered some questions I had, but I still have tons more.

WARNING!: at the end of the video they ask for PHYSICIAN input and questions. Please DO NOT respond to that, or they will realize that the general public can view it, and probably move it so that we can't refer to it.

This one should work... it works for me.

Open Original Shared Link

  On 2/18/2011 at 12:17 PM, ravenwoodglass said:

Have you had your total IGA tested? If your low on that the IGA related tests would come out negative, that would be a reason not to do them.

Hi Raven,

Nope, the only tests he ran were the TTG and the DQ2 and DQ8 test, but I've noticed while reading on here, that lots of people that had negative TTG had positive DGP, which he didn't run ... so it makes me curious. Also, the DQ2 and DQ8 are apparently directly related to celiac, but their are so many unknowns even to the experts at this point that what ever my DQ's end up to be, they could be related to NCGS... and I'm thinking that's a strong possibility. I think research and testing just hasn't caught up to the actual issues and sensitivities that people have developed over the years... probably from genetic altering of gluten. I read somewhere that wheat (along with practically everything else that's grown) has been genetically altered to create "super gluten" which is NOT the same as the gluten people were eating 50+ years ago, and that humans can't handle the proteins in it, which is why doctors are seeing an explosion of celiac and gluten related sensitivities. The Mayo lecture I saw said it is four times as common now as it used to be.

I should post the link if I can find it. REALLY interesting info. Here it is! This is a MAYO CLINIC Video HotTopic lecture, specifically directed to other physicians, not the general population. Open Original Shared Link Be careful in watching this video and trying to understand it without medical knowledge. I misunderstood when I first saw this and confused the TTG with Gliadin IGA and Gliadin IGG tests. The second two (not the TTG) have been replaced with DGP, as it is a newer and better test, if I'm understanding the video correctly. I had to watch it a couple of times and read lots of other things to understand the differences in the test names, etc. And truthfully, they're still confusing to me sometimes. Enjoy!

Oh, there is another lecture video where Dr Murray and a pediatritian and a nutritionist/dietitian expert all speak. I'll try to find that link, too.

Can't remember how I came across this, but clicked on the video and got curious about the symptom checker thingy. I printed it out and took it, and had my husband take it too, as I said my numbers were sky high compared to his. This stuff is all free, BUT keep in mind they have a product (some food journal or something) they are trying to sell, so use an email you use for junk mail, cuz you will get spammed. That said, click at your own risk! LOL Open Original Shared Link

  On 2/7/2011 at 11:47 AM, jeanne- said:

Hi and welcome,

I had the genetic testing and came back with the dx of non-celiac gluten sensitivity enteropathy and have been gluten free since sept. Last week I went to a restaurant for the first time since the dx. Somewhere in the meal, I was glutened. Like you said, it has been like having the flu for the last eight days, these GI symptoms are much worse than in the past. Take care.

Hi Jeanne,

Your post caught my eye because I've been trying to find out what tests diagnose NCGS. Can you tell me what tests they did that determined that's what you had rather than celiac? Did they tell you you have specific genetic markers or something? Or was it a blood test? Thanks in advance!

Yikes, that would be me! Used to be REALLY quick... now I can't recall things. I'll search for a word I know as well as my own name... and can't come up with it. It's more a recall thing with me, too.... not memory loss... and its SOOOO annoying! It's been noticable for about the last 3 months or so.