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heyitsmissa

Second Panel has come back...advice?

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Hey everyone, I'm new to the board, but not new to being sick. I've just recently had my second Celiac panel results come back, and they are remarkably similar to the panel done in 2012. 

Results: 

Nothing came back positive EXCEPT the deaminated gliadin. This is what came back positive in 2012 as well. I have not had an endoscopy done, but am waiting for a call from my doctor about potentially scheduling one. I think that enough evidence points to Celiac that I shouldn't have to endure the endoscopy. Here's what's been going on in the last 4 years - 

  • Vitamin B12 deficiency 
  • Vitamin D deficiency 
  • Iron deficiency 
  • Severe fatigue 
  • Frequent infection - walking pneumonia, flu, staph 
  • Constipation 
  • Lactose intolerance
  • Decreased hearing 
  • Bouts of bloody and mucous-y diarrhea (found self-limiting colitis in my cecum)
  • Bloating
  • Random low-grade fevers 
  • Intense fatigue after meals 
  • Restless legs (relevant? not sure)
  • Appendix removed
  • Gallbladder removed
  • Back pain (anywhere from moderate to severe, but usually severe)
  • Diagnosed with pre-lupus (based on high ANA and low white blood cell count)
  • New migraines
  • Numbness in hands and feet
  • Dizziness
  • Dysautonomia (heart rate goes from normal to 140+ simply by me standing up from sitting or lying down)

So, thoughts? Can I just skip the endoscopy? It seems plain as day to me. 

Thanks!

 

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The gold standard for diagnosing celiac disease still includes an endoscopy that obtains several (up to six) tissue samples.  Is there a reason that you did not get one two years ago?  Some of our members do not get one because of 1) financial reasons or 2) the wait time in obtaining the procedure is long (e.g. Canada).  If you can, I would recommend one because it is nice to have a benchmark of damage and can help erase any doubt of your diagnosis making it easier to stick to a life-long gluten free diet.  

Do not take my word alone.  Read for yourself from the American College of Gastroenterology:  

 

http://gi.org/guideline/diagnosis-and-management-of-celiac-disease/

By the way, I only test positive on the DGP Iga (even on follow-up tests) and never had a positive on the rest of the celiac blood panel.    Yet, I had moderate to severe intestinal damage.  My symptom?  Anemia.  Two months after my diagnosis, I started breaking bones doing NOTHING!  

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I didn't do an endoscopy in 2012 because my doctor didn't think it was actually celiac. More and more issues have come up since then, which is why we repeated the test. (Though the results were identical)

Is there any other cause of an elevated DGP IGA? I can't seem to find another cause of it other than an autoimmune response to gluten... some circles of study seem to believe this is more accurate than the TTG. If I can avoid an endoscopy (copay + the sedatives) I'd really prefer to. Though I understand the purpose. 

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Only you can decide what is the best thing to do for you.  

Here's my personal experience.  Hubby went gluten free 14 years ago per the poor advice of his GP and my allergist.  "Hey, give up gluten and see how you do?"  Well, it worked.  Gluten was the problem.  We all know it.  But now we have a new doctor and she really does not believe my hubby.  Okay, so what?  He is a big boy.  Hubby will tell you that I get way more support from medical, family and friends because of my formal diagnosis.  Bone scans -- no problem.  Follow-up testing?  No problem.  Check for other autoimmune diseases -- no problem.  Check for nutritional deficiencies -- no problem.  Get our kid tested  every two years with the complete celiac panel -- no problem.  Get the rest of my first-degree relatives tested?  Well, that has been a problem for some of them.  They are not ready to give up gluten.  "Ya, can lead a horse to water, but you can't make him drink."  :D

I was happy to find that celiac appeared to be my only intestinal issue.  No crohn's, no cancer, no ulcers, no SIBO were found.  All were ruled out.  Because you can have one disease at a time!  

I have not found anything to indicate that an elevated DGP is not related to celiac disease.  But I have not read the thousands of studies out there.  My GI docs were stumped as to why I continue to test this way.  

So, I wish you luck no matter what you decide.  If you do go forward, keep consuming gluten until all testing is complete.  Please try to find a celiac savvy GI because it sounds like your PCP doc was clueless.  Two more years of needless suffering and damage!  :(

 

 


Non-functioning Gall bladder Removal Surgery 2005

Diagnosed via Blood Test and Endoscopy: March 2013

Hashimoto's Thyroiditis -- Stable 2014

Anemia -- Resolved

Fractures (vertebrae): June 2013

Osteopenia/osteoporosis -- June 2013

Allergies and Food Intolerances

Diabetes -- January 2014

Celiac.com - Celiac Disease Board Moderator

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I am glad  that I went through the trouble of getting the "gold standard" diagnosis.  It's been less than a year for me (biopsy was in May) though I have had symptoms like you described for years before that.  Expenses that are health related may seem like a pain at the time -- they are expensive.  But the peace of mind is worth it.  

With the "official" diagnosis, people take you a little more seriously when you say no gluten.  Good luck as you try finding out what is troubling you.

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The endoscopy is really a pretty easy procedure. You don't have to do the nasty prep that is done with scoping the other end.  You go in, they put you to sleep for a very short time and then you go home.

If you really don't desire one then talk to your doctor. You have positive blood work and sometimes doctors will give an official diagnosis with that and a resolution of symptoms on the diet.  An official diagnosis is important so insurance companies will cover follow up testing like bone scans and repeat panels and vitamin and mineral levels etc. Some folks also have a hard time staying compliant with the diet without one and it makes it easier to get your relatives to take you seriously.

Do make sure that you continue to eat gluten until all the testing you choose to do is finished. Then you can get on the diet and begin healing.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Thanks for the input everyone. I can definitely see the benefit of the endoscopy, I've just seen 15+ doctors in the last 3 years and have had so many procedures. Gallbladder surgery, appendectomy, 2 colonoscopies (1 showed colitis in my cecum and into my small intestine...), 2 MRIs on my brain, 2 CT scans, an MRI on my knees (ski injuries, woo), a spinal MRI, countless blood labs, bone density test (several years ago), 3 hearing tests, allergy testing, catheterization to test for interstitial cystitis, neuropathy tests, countless EKGs, several ultrasounds for various reasons, sleep studies, and frankly, I'm just plain sick and tired of being poked and prodded. This list doesn't include the 3 flu tests, 2 staph tests, or the pneumonia and flu vaccines I've received. YES, pneumonia vaccine because my immune system has utterly failed me. I'm on 11 pills a day for several different diagnoses. But nothing is making a significant difference. Gastro is willing to monitor the gluten free, and diagnose if the change in diet helps me. I've tried everything else, and with the positive blood work in a serum that's literally not used to test for anything else... I don't need any other motivation. I'm so tired of being sick. 

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Good grief!  I totally see why you would want to steer clear of doctors!  :o  I am so sorry that you have had the typical Celiac experience........you are falling apart on all levels and the doctors never figure it out.  I just have a few added words to say about the endo.......

Yes, the only thing that will trip a DGP is a reaction to the gluten you are ingesting.  Having only 1 positive does not exclude Celiac so the doctor that didn't look deeper in 2012 after your DGP was positive is guilty of being an idiot. He has caused you 3 more years of illness and suffering.  From the list you gave above, you sound like a walking talking case of Celiac.

When I received my blood work back, it was more definitive than yours. I failed all the tests by huge numbers and presented with classic Celiac. I was extremely sick at the time, thanks to the AMA, and I refused the endo because I was too sick to have them shove a tube down my throat. I figured if the gluten-free diet did not help, then I would have to resort to the endo then, to see what could be happening.  Within 3 days of starting the diet, the Big D was gone, without any use of anti-diarrheals....just went gluten-free.  The vomiting stopped.  It was miraculous. I never had the endo and have been doing great these past 11 years.  I also had gene testing done and came up with a double Celiac gene so there was no disputing what it was.  The most important thing you have to remember is that if you skip the endo, you have to be comfortable with eating strictly gluten-free for the rest of your life.  I have never had a problem doing so. I actually don't think this diet is that big of a deal. How hard is it to eat gluten-free healthy? I didn't have to change my diet all that much anyway....just stop eating all that wheaty bread the docs said I needed to eat for health!   :blink:  You will find that if you respond in a very positive way to the diet, you won't even want to go back to eating gluten.  I wish you luck with your decision and success with the results.

BTW...having a high ANA and low white cell count does not mean pre-lupus.  I don't know who told you that but I had really, really high ANA 10 years ago and always have had low white cell count.  Both are common with autoimmune disease in general. The ANA is not a test for any specific disease.  My original ANA was 1:2560 and after about 8 years gluten-free, it was down to 1:320. I also have Hashi's thyroid disease, Reynaud's Syndrome and Sjogren's Syndrome. I still have a low white cell count but never get sick anymore so it is not something to get worried about.  So, you see, all this can be improved with the right food. Do not give up and do not let the gloom and doom people interrupt your healing that is to come.  ;)

 

 

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Gemini - 

Thank you for everything you've said. I'm going to skip the endoscopy. I agree with you that this diet isn't too terribly difficult to follow, until I have a craving for a molten lava chocolate cake at Applebees or something! ;) It IS also difficult to eat out, and I travel fairly frequently. Alas, I will make it work. 

The official diagnosis for my auto-immune disease was Undifferentiated Connective Tissue Disease, and he said it was behaving like lupus. Thus, "pre-lupus." It was also based on symptoms and the rheumy did this test where he looked at my cuticles under a neat little microscope. Turns out, my blood vessels are shaped like corkscrews instead of how they're supposed to be! This was what also led to the diagnosis of the UCTD. I say "pre-lupus" because most people have heard of lupus while few have heard of Undifferentiated Connective Tissue Disease. Turns out, all this crap could be celiac on its own, especially knowing that the only thing that would trigger this blood work is a reaction to gluten. (and again, this has happened twice, so it wasn't a fluke.) I'd rather save the extra poke, sedation, and copay and just go about it. My doctor is actually incredibly supportive in all that I wish to do, and he'll order any tests I ask for. Most recently, inflammatory bowel and the small bowel barium swallow. YES, I volunteered for that crap because I felt so awful. 

Again, thank you! I think I have my answer, and I'll know for sure whenever I start to feel better. I know this could take anywhere from 6 months to a few years depending on the damage done. 

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2 hours ago, heyitsmissa said:

Gemini - 

Thank you for everything you've said. I'm going to skip the endoscopy. I agree with you that this diet isn't too terribly difficult to follow, until I have a craving for a molten lava chocolate cake at Applebees or something! ;) It IS also difficult to eat out, and I travel fairly frequently. Alas, I will make it work. 

I don't know whether or not you have a Whole Foods Market nearby but......they have a new cake out from the gluten-free dedicated bakery line called chocolate salted caramel cake.  In all my 11 years gluten-free, I have never had gluten-free cake this good. Thank goodness I am still slight of frame and exercise because this could be addictive.  I served it at a birthday party for those of us who couldn't eat the regular poison cake and people were amazed and could not believe it was gluten free.  It's that good and doesn't cost an arm and a leg.  I felt I should tell you that......;)

Just get one of the good books on celiac, not written by a celebrity, and learn the more crazy places gluten may be. I did not have that much trouble because most of the food I wasn't supposed to eat I had already ditched because, funny enough, they made me feel terrible. God, hindsight is soooooo 20/20!

The official diagnosis for my auto-immune disease was Undifferentiated Connective Tissue Disease, and he said it was behaving like lupus. Thus, "pre-lupus." It was also based on symptoms and the rheumy did this test where he looked at my cuticles under a neat little microscope. Turns out, my blood vessels are shaped like corkscrews instead of how they're supposed to be! This was what also led to the diagnosis of the UCTD. I say "pre-lupus" because most people have heard of lupus while few have heard of Undifferentiated Connective Tissue Disease. Turns out, all this crap could be celiac on its own, especially knowing that the only thing that would trigger this blood work is a reaction to gluten. (and again, this has happened twice, so it wasn't a fluke.) I'd rather save the extra poke, sedation, and copay and just go about it. My doctor is actually incredibly supportive in all that I wish to do, and he'll order any tests I ask for. Most recently, inflammatory bowel and the small bowel barium swallow. YES, I volunteered for that crap because I felt so awful. 

I am familiar with UCTD.  You know, some of these AI diseases overlap with symptoms so much, they have trouble figuring out what you have. Reynaud's shares some symptoms with UCTD but it has gotten a lot better once I was gluten-free for awhile.  I felt immediately better on the gluten-free diet as far as my gut was concerned but the recovery time for all my symptoms was 3 years. I was 46 when diagnosed with Celiac and I swear that by delaying my diagnosis for that, I ended up with all these other problems. Just be patient and if you do the diet well, you will get results!  I am very happy you have a supportive doctor because that can be rare.

The eating out problem.....I do not eat out all that often but as you know, people like to take a vacation.  Rule of thumb is try to eat out at higher end restaurants.  They have chefs who have actually gone to culinary school and they know what gluten is and are taught cc. Use this website:

http://www.findmeglutenfree.com  It lists places, which are reviewed by Celiac's and the gluten sensitive, and I have had good success with it. Punch in a zip code and it comes back with lots of options for gluten-free dining.  I tend to keep dining out to the dinner meal. I now rent apartments instead of hotels so I can cook breakfast in. But hotels have come a long way and some of the better ones offer great gluten-free breakfasts which won't make you sick.  But you have to watch out that you don't overdo eating out. If you can get a room with a small fridge and a microwave, you can cut down on risking a hit, while still dining out at night.

I hope you stick around because there are great people here who will help make the transition smoother for you.  :)

 

 

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It sounds like you have a good doctor. That helps a great deal.

It can be difficult if you travel a great deal but if you can get a hotel room with a kitchenette that is helpful  When I travel I carry a hot plate with me, a pot, some utensils and a cheap toaster. I do make sure that I put the cooled hotplate away if I am having maid service as some hotels don't want you to have one in the room.  That way in a pinch I can just heat up some Dinty Moore canned stew with some toast or whatever I can find at a local grocery.  The link Gemini gave you should be quite helpful and I have resorted to just putting my zip code and 'gluten free restaurants' in a search engine and had quite a bit of luck.

I do hope you heal quickly but be patient as some issues can take some time.  Eat as clean as you can to keep things going as smoothly as possible. It might be a good idea to avoid dairy and soy at first as those are two things that can give us trouble.  Not saying that will be the case for you but it is better to avoid them at first and then add them in after you feeling a bit better. That way you can better pinpoint if one or the other is also an issue rather than thinking that you are getting glutened.  I kept thinking for a long time that even gluten free packaged foods were 'getting' me and it turned out to be soy protein. That causes a lot of confusion at times. Not to speak of the pain.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

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Well, I love my doctor as a person, but just got the results and "interpretation" in the mail. 

"One of the celiac markers is elevated, but this is not diagnostic for celiac disease. This has not changed from prior study." (same marker came back high in 2012.)

I have a follow up a week from today, and I'm taking all kinds of literature with me about my specific marker, plus a list of all symptoms and diagnoses over the last 3 years. I know that without a biopsy, you cannot technically have a diagnosis, but I'm hoping he will work with me on this. If I absolutely have to have an endoscopy, I will. But I'm 4 days into gluten free, and really don't want to turn back. At that point, it'll be 11 days in. UGH. 

Or maybe he just can't put it in writing. I dunno. This is the same doctor who will pray over me, prescribe anything I ask for, do any tests I ask for, and work with me on anything. I'll keep everyone posted. I have a positive outlook, but for the endo, I'll have to go back on gluten, and I really don't want to do that since I'm cleaning out my kitchen today... Lord, help me.

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1 hour ago, heyitsmissa said:

Well, I love my doctor as a person, but just got the results and "interpretation" in the mail. 

"One of the celiac markers is elevated, but this is not diagnostic for celiac disease. This has not changed from prior study." (same marker came back high in 2012.)

I have a follow up a week from today, and I'm taking all kinds of literature with me about my specific marker, plus a list of all symptoms and diagnoses over the last 3 years. I know that without a biopsy, you cannot technically have a diagnosis, but I'm hoping he will work with me on this. If I absolutely have to have an endoscopy, I will. But I'm 4 days into gluten free, and really don't want to turn back. At that point, it'll be 11 days in. UGH. 

Or maybe he just can't put it in writing. I dunno. This is the same doctor who will pray over me, prescribe anything I ask for, do any tests I ask for, and work with me on anything. I'll keep everyone posted. I have a positive outlook, but for the endo, I'll have to go back on gluten, and I really don't want to do that since I'm cleaning out my kitchen today... Lord, help me.

That is just doctor speak and they are required to behave that way.  ;)  If this doctor will do any test you ask for, how about doing the gene testing?  That will at least tell you if you have one or both of the genes to actually predispose you for Celiac.  It doesn't mean you have it, as you probably already know, but with your laundry list of illnesses and symptoms, plus a positive DGP test twice, it sure does get frustrating and annoying when they insist of extremely invasive testing. Plus, what would happen if they didn't find any damage? That does not rule it out, with a positive DGP twice! But they will tell you it may or they will at that point ask for a dietary trial.......which you are already doing.  You do what you feel is necessary for your own comfort but this is the main reason I do not spend a lot of time in a doctors office. They make things much harder than it has to be....all for their own record.

Good luck and keep us posted!  :)

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2 minutes ago, Gemini said:

with your laundry list of illnesses and symptoms, plus a positive DGP test twice, it sure does get frustrating and annoying when they insist of extremely invasive testing. Plus, what would happen if they didn't find any damage? That does not rule it out, with a positive DGP twice! But they will tell you it may or they will at that point ask for a dietary trial.......which you are already doing.  You do what you feel is necessary for your own comfort but this is the main reason I do not spend a lot of time in a doctors office. They make things much harder than it has to be....all for their own record.

It is incredibly frustrating, and I think it's a money issue. They get paid significantly more to do procedures. I think one mistake I've made in my gastro's office is only mentioning gastro symptoms. He is unaware of everything else, so I think that this is partially on me. I've created a document listing all symptoms and deficiencies and diagnoses since the 2012 panel along with research on the specificity of the DGP. (it's really specific for celiac!) For the longest time, I was convinced I had a rheumatologic issue, so I only mentioned my plethora of symptoms to my rheumy. Not anymore! Appointment is a week from today. I think he'll be understanding and supportive. He always has been. Though I have found with most other doctors that YES, they make things more difficult than they have to be. And it's beyond frustrating for those of us suffering. Also, if one more doctor asked me if it was anxiety, they were getting punched in the throat. :D 

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On January 29, 2016 at 2:32 PM, heyitsmissa said:

It is incredibly frustrating, and I think it's a money issue. They get paid significantly more to do procedures. I think one mistake I've made in my gastro's office is only mentioning gastro symptoms. He is unaware of everything else, so I think that this is partially on me. I've created a document listing all symptoms and deficiencies and diagnoses since the 2012 panel along with research on the specificity of the DGP. (it's really specific for celiac!) For the longest time, I was convinced I had a rheumatologic issue, so I only mentioned my plethora of symptoms to my rheumy. Not anymore! Appointment is a week from today. I think he'll be understanding and supportive. He always has been. Though I have found with most other doctors that YES, they make things more difficult than they have to be. And it's beyond frustrating for those of us suffering. Also, if one more doctor asked me if it was anxiety, they were getting punched in the throat. :D 

Ha, Ha, Ha!!!!!  You have a great sense of humor!  At some point, the anxiety issue always comes up.  I remember one doc saying I needed to go "talk to someone" about my problems and that would help my stomach issues and I almost told him that the only problems I had were doctors who couldn't help me.       ^_^

Good luck with your appointment and keep us updated...........hope it all goes well!

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i'm not a doc fan, either.  you're like a cash machine when they can make all sorts of $$ on all your separate symptoms - how much $$ do they make with a celiac dx?   $0.00 !  because the ONLY CURE is the gluten-free diet, so, doctors lose $ treating your symptoms.  they also lose in the future, when you don't catch every damb germ in a hundred mile radius or when you don't develop something terrible from leaving it untreated.  your symptoms sound like mine were.  doctors jerked me around for 25 years!   i got a negative blood test (but they didn't use dgp....  big surprise...) and i was already gluten free but there was visible damage when they did the scope.    fast forward five years:  i've not been sick (unless i mess up the diet and that's not often) no pneumonia <all winter, every winter since i can remember)  i just came back from a church trip youth convention weekend - everybody is sick - guess who's NOT sick?  this girl.  my immune system is up and running woo hoo!!  quality of life :)  it's a thing :)  hang in there kiddo --  welcome to the forum.


arlene

misdiagnosed for 25 years!
just as i was getting my affairs in order to die of malnutrition...
gluten free 7/2010
blood test negative
celiac confirmed by endoscopy 9/2010

 

only YOU can prevent forest fires - smokey t. bear

 

have a nice day :)

Celiac.com - Celiac Disease Board Moderator

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I have an official diagnosis on paper and it was NOT done with endoscopy.  My doc  says they are no longer considered reliable for celiac diagnosis because the damage can be missed...a negative is not conclusive...if damage is found, that would of course be conclusive, but if damage is not found, it is not.  My diagnosis was based on blood tests that showed high antibodies against gluten and gliadin along with malabsorbtion indications.

At first I was having a difficult time accepting the diagnosis without the endoscopy, so got the DNA test to see if it was even potential for me to have it, and it did come back positive (yes, I know, everyone, only a small percentage of those that are positive with the celiac genes actually develop it).  But it was what I needed mentally to accept and commit.

That was all in Summer 2015, I've been gluten free since July, dropped 30 lbs of inflammation, starting to feel more energy, able to smell again after years without, no intestional distress after eating, which is all more confirmation to me.  I'm totally accepting of having celiac disease and looking forward to more improvements in overall health.  I haven't had a single cold or flu since...and I used to get one after the other constantly.

I would recommend my doc if you are in the Seattle area.

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Oh and you mention RESTLESS LEGS ... I had that, weird feeling of movement or muscles firing when not moving them, and irresistible urge to move my leg, usually in left leg but sometimes in right leg.  It would set in usually in the evening and could keep me from falling asleep for awhile.  It's completely gone now after I was off gluten for maybe only 2 weeks.  :o)

Doc says from either some nutritional depletion / neurological damage, root cause ... Celiac's.

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Update! 

I went to my follow up with my gastro. He's hesitant to diagnose celiac without an endo, but said he will redo the blood work after I'm several months gluten free. My DGP IGA should drop after being gluten free, right? This could confirm the suspicion? I know the TTG levels drop, but want to be sure the DGP also drops on the diet. 

Thanks! I've already replaced all kitchen equipment and pantry/fridge items. Early on I didn't realize the potential for cross contamination in restaurants. Now I do, so eating out has been put on halt for a bit. 

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Yes, the DGP IGA should drop also. If the gastro said that then he must be willing to dx based on positive results from being gluten-free. GOOD DEAL!

Just to be sure, go through every food item in your kitchen again. Take a magic marker & write gluten-free on each box, bottle or carton. Why? Because when I went gluten-free, I thought I had already checked an item but I didn't use the magic marker method & a month went by then I got hit, I had missed ONE item. So use that magic marker so you don't miss something okay? Learn from my mistake. 


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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1 hour ago, frieze said:

and that would be EVERY box/bottle/bag.  they can change ingredients without notice, or changing in packaging.

Absolutely!

Our Motto:

READ EVERY LABEL EVERY TIME


Gluten free Dec. 2011
Dermatitis Herpetiformis

Reynaud's October 2018

Rheumatoid Arthritis October 2018

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If you follow the gluten-free diet correctly, without being paranoid about it either......your DGP will drop because you won't be eating the food that makes it rise.  I think having a gluten-free house is a great idea because it allows you to relax in your own home.

As for reading labels all the time, I have a few comments on that one.  In the beginning, and depending on just how much processed foods you plan on eating, it is a good idea to get into the habit of reading labels.  You learn how to do that correctly from experience.  However, in 11 years gluten free, I have never once seen any processed food I have bought that changed their ingredients. I'm sure it can happen but I've never seen it. Usually, with higher end brands, they never do that because if the product is a success, they don't mess with it.  I can't speak for generic or store brands because I do not buy them. I do not eat a lot of processed foods either.

If you are buying a product specifically geared towards the Celiac population and is certified gluten-free, you do not have to check the label unless you have other food intolerance's. Glutino and the other companies which market a gluten-free line of products will not change their ingredients and put something in there we cannot have. Whole Foods Market Gluten Free Bakery line....same thing.  They are all dedicated facilities that make food for Celiac's and are not a worry.

I am from New England and buy B & M baked beans, which are gluten free. They are a New England company and haven't changed their recipe for years and years...in fact, maybe never.  Those beans are an institution around here and they will not change their ingredients that have been popular for a very long time.....they have been around since my great-grandmother's time. I buy the basic ones without the added flavorings like onion, etc. I can't speak for every flavor they produce because I eat only the basic beans. But I no longer check the label....don't have to. The company specifically told me they don't mess with success and would not change ingredients.

Supplements are something you need to read labels on every time but food items are a little different and you will become very good at understanding the whole thing the longer you do it. It becomes second nature. I am very happy you are on your way to a much healthier life!  :)

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