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
      103,880
    • Total Posts
      919,451
  • Topics

  • Posts

    • Celiac - How many symptoms can there be?
      Hi Everyone I am new here and wanted to see if anyone else is experiencing the same thing I am.  I was diagnosed positive for celiac in 2/2016 via biopsy from an endoscopy.  I was negative for blood work because I self-eliminated gluten 9 months prior; so I guess I had not antibodies register in my lab work.  Prior to 2/2016 I was having symptoms for almost an entire year.  Despite cutting out grains in general for 9 months, I would have a gluten attack at least once a month.  I have had a history of sinus, bronchial infection.  I remember as young as 17 getting sick but I always bounced back and was active in sports and working out.  But in the past year I developed the following symptoms - Sudden desire to pass out, nausea, headaches, heart palpitation, crashing exhaustion as if I was recuperating from the flu, wheezing in my chest. I was bounced around to an allergist at this and was told I was asthmatic and I had food sensitivities to dairy, nuts, corn or corn derivatives (including corn syrup) and grains.  so I cut everything out!  Despite cutting everything out I was still have episodes at least monthly, possibly cross contamination.  In April 2015 I traveled to the Carribean for 2 weeks,  I became very ill with a urinary tract infection, stomach bug and severe back pain with constant fever.  I was treated with antibiotics (Bactrim) for 10 days which did clear up the situation. I came home and dismissed everything to a coincidence.  Six weeks later the GI distress woke me up in the middle of night.  The pain was so excruciating that when I sat on the toilet thinking I had to go, I almost past out from the pain.  I lay myself down on the floor until it subsided.  The next day I contacted my primary and was immediately seen.  She referred me to a GI specialist but the appointment was not until August.  Then 2 weeks before my GI appointment they called and rescheduled for late September.  I saw him and by then I was feeling better; no epsides for almost 2 months.  So we did nothing.... boy did I talk to soon.  Immediately after the appointment I had an attack.  These were the symptoms: Nausea, crashing fatigue (as if I was hit with the flu), diarrhea, dizziness,, loss of appetite,  lower back pain, specifically in the middle; intestinal discomfort and body aches which lasted 10 days!! and abruptly disappeared, thank God.
      . I had to wait to see the GI until 1/2016.  Once I saw him he did labs which were all normal.  He checked my liver, kidney, pancreas, blood count which was all normal.  He also scheduled the endo/colonoscopy for end of 1/2016.  Speeding forward in time....since the Endo/Colonscopy procedures, I had attacks January through March which last 7-10 days each time.  I finally had a break for 2 months and today as I type this I am on day 6 of another episode.  What I wanted to see if anyone has experience the following.  For me each episode is getting worse with the following symptoms: Nausea (horrible), back pain on the left side both in the rib cage (the front and back) at times this pain also gravitates toward my left hip.  I also get diarrhea, bloating, intestinal distress, crashing fatigue and loss of appetite.  What really hits me hard is the rib cage pain that is in the front and back on my left side.  I will be seeing the GI doctor in August; but I am hoping to see him sooner Any input in reference to symptoms is appreciated.    
    • Depression / anxiety issues
      Hi all  10 weeks ago i was diganoised with celiac with blood work and a endoscopy. I have had the worst 2 years of my life that started with blood being in my stool everyday. I have always suffered with anxiety for as long as I can remember but I always just pushed trough it. I then I started having panic attacks, insomnia and major depression that I could not handle, I could not function, I lost my job because I could not leave my bed, I shaked as I lay in bed everyday uncontrollably. I met with a doctor who put me on lexapro (antidepressant) I finally gave in after 6 months and started taking them, they made me worst than I already was so I had to stop after 14 weeks. Fast forward to 15 months later and the symptoms still persists including the bloody stools, I was in and out of hospital every week and told I had all sorts of conditions, then the blood work and endoscopy Finaly discovered the celiac. I have been on the diet now for 10 weeks, the first week my anxiety went away, the horrible knot in my stomach that I have had everyday, the hot flushes, the tingling I had run trough my legs. This all left but only for a couple of days then it came back, the depression also lifted but has now came back, I have been more than strict with the diet, I check everything twice before I eat it, me and the misses have thrown away everything from our kitchen and replaced it with new things. I had my Vitiam levels checked and I'm deficient in b12, Vit D, all B vitiams. It's like one step Foward 2 steps back in tearms of healing, I know these anxiety / depression feelings are not me but I've had them for so long that I can't seem to see light at the end of the tunnel. The couple of days that they left me when incredible I felt human and alive. Just wondering if any of this has happened to anyone else with celiac or gluten intorlance. Any advice or hope In tearms of healing or am I to feel like this for the rest of my life (I'm 28) by the way. Thanks a lot   
    • So I've been glutened....
      That sounds like a plan JMG.  If things aren't working then make a change, hopefully a positive change.  It seems to me we have more noticeable symptoms sometimes after being gluten-free a while.  I made a mistake last night and ate some tuna canned in water.  It definitely wasn't boring.  I usually have more sense than to eat tuna canned in water but screwed up last night.  They canned  it in broth of some sort.  Ingredients say vegetable broth and soy.  Yuck, not good for me.  It sure tasted good though, just ouch.  I am not saying it had gluten in it, but it does have soy and some kind of unnamed veggie monsters.  So it could be soy, or carrots or some other disgusting vegetable that got me.   Not all celiacs have additional food intolerances beyond gluten, but some do.  My gut could testify to that.  Anyway, if you have bloating, cut out all carbs and sugar for starters.  And try peppermint tea or Altoids.  Over here we have something called Pepto Bismol that helps soothe gut pain and another neat thing called aspirin.  And gluten-free beer as needed.  
    • Gluten free apparently not helping entirely
      Jean, Maybe your boss can find you a job in the office for a while?  It's worth asking maybe? It's not easy being on constant travel with celiac disease but it can be done.  Your effort to find safe food is going to be harder than most but it is not impossible.  But if you can't manage it you should really think about getting a non-travel job.  Your boss may be willing to work with you on an office position, even if it's temporary.  That would give you some time to look for a local job and also eat a safer diet. It's really up to you to control your diet and make sure it is safe.  If you can't figure out how to  do that while traveling you owe it to yourself to figure a way out of the travel. Celiac disease isn't always fun and games.  Not always.   I hope you find a way to improve your circumstances.
    • Gluten Free baby food pouches?
      Anyone know of any baby food pouches that are gluten free?  We love to have them on the go for our kids (not just baby), but I have no idea which ones to get now!  We used to get Meijer brand and Plum.   Thanks!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

    • Jmg  »  admin

      Hello Admin!
      I don't know whether this is of interest to post on your articles feed:
      http://pratt.duke.edu/about/news/window-guts-brain
      Kind Regards,
      Matt
      · 2 replies
    • celiac sharon  »  cyclinglady

      Hello cycling lady, have you noticed my picture is showing up as you?  Have no idea why but it's rather disconcerting to see my picture and your words 😉  Do you know how to fix it?  You seem to have far more experience with this board than I do
      · 1 reply
    • Larry Gessner  »  cyclinglady

      Hi There, I don't know if there is a place for videos in the forum. I just watched "The Truth About Gluten" I think it is a good video. I would like to share it somewhere but don't know where it should go. Any help would be greatly appreciated.
      Here is the link if you have never watched it.
      https://youtu.be/IU6jVEwpjnE Thank You,
      Larry
      · 2 replies
  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      60,922
    • Most Online
      1,763

    Newest Member
    Barsch
    Joined