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Here Is A Link To Mayo Clinic Celiac Cascade (Recommended Steps To Diagnose Celiac)
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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:

https://acrobat.com/#d=ZmMhVGq5ZUU5qSrjV3KPlg

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. :)

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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.

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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.

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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.

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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. :)

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"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?

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"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 :P

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! :P 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". :blink:

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!

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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 ...

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.

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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.

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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.

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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 :P

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Wow shingles. Those are really tough. My mother has had them twice. Ouch! Remember that shingles is an immune system thing. You are doing the right thing in checking it out completely with the GI doctor. I asked my doctor could my symptoms be just celiac. He said there is a possibility that there could be more than celiac involved. He said it would take at lease two months to feel better on the celiac diet. If I didn

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    • I figured I would update those who were wondering.  I have gotten the appt. so far moved up to August 30. I am waiting to have gene testing done via swab for all 3 of my kiddos tomorrow. My daughters celiac antibodies came up negative but her IgA is low which the ped said could cause false negative antibodies for celiac so she will need to see a GI dr. also. The pediatrician is going to call the GI to try to get them in sooner. I am keeping them all on a gluten diet until the GI dr. decides what to do. I am on the cancellation list already for my son, however I am not going to be persistent with my phone calls to them until I have the results of the gene test. I really want that result in my hand before going to the GI dr if I can. Maybe if he is positive, along with his bloodwork and my history they can forgo the endoscopy. But he will eat gluten till then.  My husband and I have been very honest and upfront with him as to what is going on and the possibility of the endoscopy and what that entails and although scared in general he seems ok after assuring him that since I have it he has me to help him every step of the way.  Going through his current diet with him I realized that he is truly on such a low gluten diet that I am actually surprised his bloodwork shows antibodies at all!  So I told him to make a list of allllll the gluten he could possibly think of eating and he needs to pound it until the GI visit or endoscopy. Funny thing is everything he keeps thinking of to want to eat...is already gluten free!  The other night we were at a friends and he asked if he could be done with his hotdog. I made him finish just the bread 😂 Thanks for your help and advise and I will keep y'all posted on both kids!  My oldest is a ok as far as all his antibodies. Just actually had a follow up for other immune issues and all his levels are now normal!
    • I like your plan Cara, I may have to include it in my sons.    Poor little guy is still very very sick. I think he is resisting and cheating, despite having the support of two other siblings and a 100% gluten-free home. 
    • Despite it being a nightmare, I did wait for my kids to get biopsies. At one point I had one severely ill child gluten-free and two more waiting having to eat it. It was worth the wait though and I think long term a biopsy may be worthwhile, especially for school. I have already had issues with schools and camps so having a firm diagnosis has been helpful. 
    • Knowing that the reaction to gluten in celiacs is an uncalled for immune system reaction, I was thinking of how a cure would be possible. Maybe a medicine that somehow turns off the immune system. The only thing that i've heard do that... HIV.  obviously that's way worse than celiac. Just some food for thought.
    • Well, you can probably get an apple or something.  You might be able to get someone to boil you some eggs.  But be careful of things like nuts that should be naturally gluten free.  They have almost always been soaked in a flavor solution that usually containes caramel coloring, "soy" (wheat) sauce and other aditives.  If I am really hungry and must eat in a Chinese restaurant, I order plain white rice and steamed vegetables.  But even so, you must monitor it carefully.  The rice sometimes has other substances added to give it a better texture, and very often the vegetables have in fact had "just a little bit" of soy sauce added.  To be fair, celiac disease is hardly ever found in East Asians, so understandably people are not tuned it to it.  Also, culturally, with the exception of fruits, it is generally thought that the flavor of foods needs to be enhanced, so it is had to find anything natural even in the "western" gorceries. Even in the western restaurants, be careful.  Fish and meat and often vegetables are usually pre-marinated. I will not even attempt to address the issue of cross-comtamination, since that is a whole higher order of things. I do know what I am talking about; I have celiac and have worked here for nearly 7 years.  
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