Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Scared I Won't Get My Diagnosis
0

5 posts in this topic

Hi all,

So I finally went in to the doctors. My doctor is very compassionate and listened to all my symptoms. He even ran blood tests for me, but here's the catch. He couldn't find a couple of them in the system!!! Thank God however, that EMA and tTG was in there-possibly antigliadin IGA-can't remember(that's the only ones on my Celiac list that was in the system). So, waiting for the results. He did run a few others:ESR, CPR, Vit B12, Folate, etc. They all seem to be okay. Which is good news.

Here's the problem: he recognizes Gluten-Intolerance, but doesn't know too much about Celiac. I think he thinks if you have it, you'd of been diagnosed as a kid. So I asked him about testing for the Genes, and he was very honest and told me that it was over his head. (He and the nurse both mentioned it would be better to go to a Holistic/Naturopath as they are more up to date on food allergies, etc.) Other patients have come in about gluten, and he runs tTG- and that none of them have ever turned it positive, but advises them to go gluten-free and see how they feel. If better, stick to it.

So, as I've been dying to go gluten-free(pun intended), I've been waiting for all the testing to be done. I asked about an endoscopy, but he felt that...its pretty much on the wall, so just go gluten-free and see how I feel. As far as all these little bumps on my skin(all over my body that look like bug bite/little pimple and itch like hell, and pop up from gluten-esp beer!) that I swear it's DH, they didn't seem to phase him at all. Well, I don't think he knew what DH is? Or that It didn't look severe enough. So basically, I'm advised to go gluten-free which is music to my ears! BUT, that's it!?

I received my enterolab kit the same day as my doc appointment(coincidence-I think not! :rolleyes:). I feel I'll be getting more accurate results from them. I also ordered the Gene panel, so that will give me a little more insight. I'm also thinking about going to the Holistic doc with all my results. Actually, I will be. You see, it's not like I'm eager to be diagnosed a Celiac, it's that I'm eager to know if I am or not. I'm also not the only one in my family with all these crazy symptoms in regards to gluten, I'm just the most severe. So knowing will not only bring me assurance, it'll also give my family some insight as well. Cause at the end of this all Celiac, or NCGI...I will be gluten-free! :)

I also mentioned in another post about a mass in my abdomen. Thank God, my doctor felt it(estimated to be 5cm) and will be getting ultrasounds first. I always wonder now, if this mass could have anything to do with my whole ordeal with gluten. I've read enough about Celiac disease to know that:

" If a person with the disorder continues to eat gluten, studies have shown that he or she will increase their chances of gastrointestinal cancer by a factor of 40 to 100 times that of the normal population. Further, gastrointestinal carcinoma or lymphoma develops in up to 15 percent of patients with untreated or refractory celiac disease. It is therefore imperative that the disease is quickly and properly diagnosed so it can be treated as soon as possible."-Celiac.com

Not saying I have cancer, but what ever's in there is serious and will most likely have to be worked on so to speak. :( It's sad too, I've been very aware of the mass since 2009. So time will tell. I just want to know if I have Celiac or not...so sad that it's SO hard to figure out!!!!!!!!

If you've made it through my whole story, thank you very much. Every one on here has been truly supportive and I appreciate every one's input. :) Thank you.

0

Share this post


Link to post
Share on other sites


Ads by Google:

Mushroom? Ravenwoodglass? What do you think? :( Sorry I know you guys post a lot, and that you have good advice.

0

Share this post


Link to post
Share on other sites

Mushroom? Ravenwoodglass? What do you think? :( Sorry I know you guys post a lot, and that you have good advice.

I am not sure where you live, freeme, but it appears that the lab the doctor uses does not run the DGP test, IgA and IgG, which is the newest test and the one most predictive of celiac IMHO. I base this on the fact he could not find it on the form - or maybe he was using an out-of-date form and could have written them in. It will be interesting to see what results the other tests prodouce. Did he order the total serum IgA (sometimes referred to as immunoglobulin).

Sorry to hear about your abdominal mass. Hope you can get in soon for an ultrasound on that. It is probably not serious - at least try not to worry about it.

You say you live on an island. Is there someone on that island who is a dermatologist, or a boat you could take to get to a dermatologist? Because if you were to get a skin biopsy of clear skin immediately adjacent to one of your skin lesions and that came up positive, that would be a diagnosis of celiac disease. But it must be an active lesion so you would need to do it right away before the gluten antibodies leave your skin when you go off gluten.

I take it this doctor of yours is not interested in referring you for an endoscopy with biopsy if your blood work comes back positive?? Too exotic for him, I gather??

Altogether, not a very encouraging report on the state of celiac diagnosis. :angry: You would probably be better off with a naturopath. I am not certain if the state you live in permits naturopaths to order blood work; maybe she/he could order the DGP tests for you (deamidated gliadin peptide). Certainly you will get someone who knows a lot more about the importance of food to the body.

Best wishes on your test results when they come through. Do let us know what they are, along with the reference ranges from the lab (i.e., get a hard copy of the results from your doctor). :)

0

Share this post


Link to post
Share on other sites

You got a pretty complete answer from Mushroom so I don't have a lot to add. Do be sure if you see a derm for the rash that you specifically mention testing for DH as they need to do tests that will be looking for it or they won't find it. Try not to worry too much about the 'mass'. I know easy to say but not to do. Hopefully the ultrasound will give you some clear answers on whether that is something you need to be concerned about or not. There are many of us here that went a very long time undiagnosed but didn't develop cancer. Plus if you do have issues with gluten your chances of developing the cancers that we are most prone to goes down each year you are gluten free. By the time you have been gluten free for 5 years I have read that your chances of developing one of those cancers goes down to the same as the non-gluten sensitive population.

Do let us know how the tests come out and after all celiac related testing is finished do give the diet a good strict trial to see if it helps. Also if your insurance will let you self refer to a GI doctor you may want to see if you can get an appointment. If your insurance demands a referral from your GP then go to him and tell him you want a referral, period. If he won't give you one find another doctor if you can.

0

Share this post


Link to post
Share on other sites

You guys are so awesome, thank you for responding so quickly. :) Im from Hawaii, not too exotic. ;) But, I always felt things were a little slower over here as far as the medical field goes. Yeah, the tests I was asking for weren't in the computer. We did order the Immunoglobulin, it's in the normal range:

Results:

My IGA 166.0

Standard Range:

69 - 309 mg/dl

Im still waiting for a couple more to come back. He just felt that why do all those invasive testing, when it's clear that I have symptoms so go gluten-free. But I think he felt that way because he thinks its gluten intolerance. I think he was pretty sure that I didn't have Celiac. Heck, if I turn the TtG positive, who knows what he might think? Maybe see that I do have a big problem. Oh yeah, he also said that the GI docs don't really know too much about celiac as well. ERR! At least he was honest. So with that said, I really don't have any faith in the derms either. :angry:

We actually have quite a few naturopaths here. I've been referred to a really good one from a family friend. He's known for figuring out what other doctors couldn't. I actually wanted to go to him in the first place, but as we have insurance...I thought I'd push that as far as I could. My doctor is totally fine with me going there and then if there are any tests that need to be done, he said he'd order them for me. But I know now, if it's blood then maybe not as some of the tests aren't in the system.

Im so close to almost giving up, and just starting the diet already. I'm miserable. I've put on more weight. I've been in a stand still waiting for my diagnosis cause Im so brain fogged, fatigued, and in pain that I don't do anything except things around the house. SO not the way I should be living my life. Hell, I live on an island..I should BE outside! :( So ladies, Im really trying to hang in there. I think my last attempt would be me taking my results from the doctors and enterolab to the holistic guy. Free consultation, so why not give it a shot? I just have to see if I can wait that long. Enterolab take 3 weeks to come back. Haha, maybe I should just go see him-results or not...just see what he has to say. What he think I should do.

Thanks for listening :wub:

:ph34r: And the mission continues...

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

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

Create an account

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


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,641
    • Total Posts
      921,554
  • Topics

  • Posts

    • Thanks for the replies so far everyone, much appreciated Great, another doctor gets it wrong, how many more times can they make a mess of this diagnosis process?! Bloating had gone down a bit in these first few days of cutting the gluten so I guess expect that to come back. It's one way to have a farewell tour of the gluten foods I guess - if a little or a lot makes no difference may as well go all-in... Believe me I've read that newbie thread multiple times, as well as numerous others around the web. Been doing nothing but since Tuesday when the blood test results came back and each time I go into the comments sections a little bit more of me gives up inside. Seems so many don't ever heal and so many associated complications too. The reality looks bleak apart from a lucky few it seems. The vegetarian choice is non-negotiable, it's a core part of what I believe and the thought of eating any form of animal \ fish flesh would make me physically sick (sorry meat eaters) so will have to find some way around it, how I don't know yet. Perhaps lots of this... http://www.pulsin.co.uk/pea-protein-isolate.html The cooking bit is a concern as it's something none of us do well at home, adds to the feeling of being completely lost right now. I kick myself for the decision that lead to the stress as I could've avoided all this. The only thing I can cling onto there is that I was having some pains in the side before that time which I blamed on a muscle strain... maybe that was the early stages, in which case I could feel a bit better knowing it had just come on gradually.
    • Welcome to the board. Celiac is not a death sentence by any means. I was undiagnosed from age 4 to age 46. Words can not describe the hell of the last 15 years before I was finally diagnosed. I am alive and healthier than I have ever been. There are others who also went years and are now doing well. There are some who had complications of cuorse but not everyone does. Thankfully it sounds like your doctors have found this relatively early. You should recover in time. Do be sure to read that Newbie thread and if you can get the others you live with to read it also. You can live safely in a mixed house but you to have to take precautions to be safe. As the others stated you do need to get back on gluten until all celiac related testing is done.  You don't have to eat a lot but if your going to get biopsies done you do have to have some daily. Most of all try to relax. Having celiac does take some getting used to but you will be okay.
    • Hi Kasia2016, Yes, celiac disease symptoms can vary widely.  Some people have no symptoms, we call that silent celiac.  Other have difficulty walking (gluten ataxia), skin rashes (dermatitis herpetiformis), and thyroid disease (Hashimoto's thyroiditis).  The list goes on and on.  GI symptoms can vary widely too, from mild symptoms at times to severe symptoms.
    • Hi egs1707, Welcome to the forum! Irene is right, you should not be gluten-free until all testing is completed.  The celiac disease tests are checking for immune system reactions and damage, and when you go gluten-free that starts to decline.  So the tests may not show the true immune reaction that is going on or the normal damage.  They may not show any damage in fact and you could get a false negative diagnosis.  You body starts healing and out the window go the test results.  Your doctor gets an "F" grade if they told you to go gluten-free now. But you aren't alone in having a doctor who doesn't understand the celiac disease testing process.  Many of them are woefully ignorant of proper testing for celiac disease.  That why the current estimate is somewhere in the range of 85% of celiacs in the USA are undiagnosed.  It doesn't help when doctors screw up the testing themselves.  Or refuse to test people.  Which is also far too common. I was vegetarian for 5 years.  I am not anymore and don't recommend it.  It is hard enough living gluten-free and finding safe food to eat and adequate nutrition for healing a damaged body.  I used to eat a lot of soy products when I Was vegetarian, but now soy makes me physically sick.  We can sometimes develop reactions to foods we eat a lot of while our guts are inflamed IMHO.  Soy is not a healthy food anyway from my reading. I can't do dairy now but may people who start out lactose intolerant end up being able to eat dairy after they have recovered. The best advice I can give is to avoid as much processed food as you can, and eat mostly whole foods you cook yourself at home.  When you do cook, cook big, and freeze the leftovers.  That way you can quickly take a small portion of food out of the freezer and reheat it.  Being celiac it is more important to learn how to cook.  Unless you are wealthy all those gluten-free processed foods add up quick.  Plus gluten-free processed foods often are lacking in fiber and vitamins. You'll want to watch out for vitamin deficiencies also.  Since celiac disease damages the villi in the small intestine, the vitamins and minerals etc are not digested and absorbed well.  So celiacs can be low on vitamin D, calcium,  and one other one I forget.  Vitamin B-12 may be low also ( it is important for nerve health).  Then there are some vitamins that vegetarians tend to have problems getting enough of also to consider. Adjusting to living with celiac disease means adjusting to a new diet and some lifestyle changes.  There's lots of us that make that change every year though, it's not impossible.  You will most likely end up eating better, more nutritious food than many of your peers.  And you will avoid a pletora of additional health concerns that can come along with untreated celiac disease. Learning to cook can be an adventure and you may enjoy it once you start.  you may find your taste in foods changes once you have been gluten-free for a while too. Recovery from celiac disease can take some months.  The immune system is very serious about protecting us and doesn't give up quickly.  Also it always remembers so it will react to even small amounts of gluten.  I live with gluten eaters at home and I do fine.  I just am careful about rinsing dishes off and so forth before using them. There is a Newbie 101 thread at the top of the coping with forum subsection.  It may provide some helpful info.  
    • That's great to hear you are feeling better Nightsky.  I really think when our GI systems are in distress already that it doesn't take much to set off symptoms.  Once I eliminated the other foods that cause me symptoms that helped a lot too.  And added some extra vitamin D to my diet and selenium. Many of us have developed reactions to other foods besides gluten and need to avoid them to keep symptoms at bay.  For me nightshades, carrots, soy, dairy, and celery all cause symptoms.  It took me awhile to figure out all those food culprits, but it made a big difference getting them out of my diet. But we are all individuals, and our bodies react individually.  So you may or may not have additional food intolerances develop. Celiac is one of those life journey things and we learn as we go.  Just keep the bottle of aspirin handy!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,644
    • Most Online
      3,093

    Newest Member
    Jross69
    Joined