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
      104,695
    • Total Posts
      921,778
  • Topics

  • Posts

    • Another link: http://naldc.nal.usda.gov/download/7351/PDF
    • Thanks for posting.  I know it is difficult to talk about these sorts of things even on a webforum.  It is good thing for people to be aware though about celiac disease and that it can cause mental problems.  Gluten can cause brain damage and it can cause anxiety. If the brain does heal it may take a long time. I know that gluten can cause anxiety and obsessive thoughts.  My experience has been similar to your experience. When I first quit eating gluten I had a similar constant loop and strong negative feelings. There are lots of people on this forum who get anxiety when they eat gluten. Some people also experience gluten withdrawl where they experience anxiety after giving up gluten. It can take a long time for the body to heal and for obsessive thoughts to go away.
       It is normal for people to socialize with each other and to be comfortable about it. You said you have problems still socializing and being around people. It might be a depressing thought but it sounds to me like you still have problems with anxiety.  I would recommend considering what options you have available to treat the anxiety. When I quit eating Gluten I still had some symptoms, even though I felt much better. I have been slowly recovering over a period of about three years. I had obsessive thoughts even after I quit eating gluten.  Now I very rarely if at all think about those things. My experience is that my mind would latch on to certain things that caused me anxiety and focus on those things. Sometimes my focus would shift and I would latch onto other things. My ability to socialize has also improved greatly with time. I have made some dietary changes which I believe have helped greatly. It sounds to me like you have obsessive thoughts about things and maybe some brain damage. My experience has been that my obsessive thoughts about different things went away with time. I feel my obsessive thoughts were caused by gluten and not by what people did around me or any events. As my brain healed I became more self aware and things became less stressful.  I can't give medical advice on this forum but I can talk about my current diet and my experience with celiac disease. My experience with gluten is different from a lot of other people so it is a good idea to ask other people and to talk to a doctor.  I avoid oats and avoid almost all processed foods. I buy certified gluten free food. I eat healthy and I exercise every day. I take st John's Wort as I have read studies that say it may be as effective as some other anti-depressants for treating certain types of anxiety. It is available over the counter. I started with a small dosage and then stepped it up over time. I think it helps a lot.  This is also something that you should talk to a doctor about first. https://www.researchgate.net/profile/Martin_Mahoney2/publication/7426926_St._John's_wort/links/540d8acc0cf2f2b29a386673.pdf A lot of people with celiac disease have vitamin deficiencies.  Vitamin b deficiency can cause anxiety. Some people do not process the synthetic form of vitamin b (from normal pills)  very well, and do better on an activated form of vitamin b. I take:
      1 activated vitamin b12 daily
      1 activated vitamin b6 every once in a while. 1 regular vitamin b multivitamin
      1 magnesium pill every day.
      St Johns Wort daily.
      1 zinc vitamin daily
      I drink lots of Chamomile tea and decaf coffee. I avoid most caffeine. 
      I think each of these helps lower my anxiety level.  I eat fruit with every meal. Canned fruit from walmart is cheap and good for you. I eat salad and and vegetables and avoid dairy.  I eat frozen fish often as it has healthy proteins. Eating healthy is very important. I eat potatoes and rice. http://www.livestrong.com/article/454179-what-is-methyl-b12/ I avoid eating soy sauce, soy, cheese, aged meats and fermented foods (I do drink certain types of alcohol in moderate amounts.) These foods contain lots of Tyramine. I might (or might not) have "monoaine oxidase deficiency" and if so high Tyramine foods should be avoided.  I thought I might have problems with elevated ammonia in my blood, but I am not convinced of that anymore. I limited my consumption of meat for a while as well as dairy but I am not sure if i helped.  I have heard that Celiac disease can effect other organs besides the brain and those organs can have an effect on the brain.  My current diet is working so I am going to stick with it for now. I try not to worry about things that are outside of my control. Be patient as it took me a long time to recover.  Let me know if you have any questions. There is a lot of information on this site and people who are willing to help.
       
    • Thank you. This is really helpful. I will call around next week.  I just want to heal! 
    • My endoscopy showed i had decreased folds in my duodenum. The biopsy came back and showed that my villi were fine... i have been on a gluten free diet for 6 years because i was just told i was intolerant but never had any testing before. when i eat gluten i get sick for 2 weeks. i came down with issues of other foods in march so they were trying to figure out why and wanted to know if i had celiac are not because that would explain why dairy and fructose are a problem.. both intolerant test for both were negative but the fructose test made me extremely sick but it was negative...      Im trying to figure out why i have decreased  folds in the first place. my Gi doctor is stumped on that to why the endoscopy would show damage but the under the microscope are fine. She is going to call the dr who did my scope and then is supposed to get back to  me..    would being gluten free for 6 year make it so there was damage and then my vili are now fine but still cant be seen in the endoscope?
    • Spicely Organics has both cassia and true (Ceylon) Cinnamon and are certifed gluten free along with the rest of their spices, as to tea Republic of Tea has most of their products tested and certified gluten-free also. You can visit their sites or try Amazon.
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,699
    • Most Online
      3,093

    Newest Member
    kkreuz
    Joined