Jump to content
Celiac Disease FAQ | This site uses cookies GDPR notice. Read more... ×
  • Sign Up
1 1
  • entries
    19
  • comments
    12
  • views
    11,343

Lots Of Blood Tests

2 2
Celiac Ninja

1,123 views

So...

 

Oncologist doctors and Licensed Naturopathic doctors are still not respecting each other in this valley at least. Doesn't surprise me. I the client am in the the middle. It's like a tug-o-war game really. One person says this, another person says that. There is absolutely no reason under the sun why a oncologist doctor can not respect nutrition. There is equally no reason why a Licensed Naturopathic doctor can't speak with the oncologist doctor before referring a patient.

 

Yup. That's fun for me. I'm trying to explain things after being gluten-ed for a week by the wrong tea (my fault) and am messing up the words. It doesn't help that the oncologist doctor is of eastern origin and likes to verbally start conflict with female patients. Not cool in this country. I won't be seeing him after the CT scan.
This oncologist also said there isn't anything significant about celiac disease to be concerned about.

 

I assumed he was a moron and had not taken professional classes on celiac disease.

 

I don't like to switch physicians. The family practicing nurse could not handle all my health history. I filled out that stupid paperwork and answered TOO honestly about health history and that is OVERWHELMING for them. Simple, don't fill all the paperwork out. Don't tell them everything.

 

Another unfortunate thing is; gossip doesn't not know no bounds within the professional organization.

 

So when someone has labeled a patient a hypochondriac, it gets passed on. Or if a patient sees one doctor that talks to the radiology department, the nurses, or other physicians then the rest of the department hears of that one doctor's personal opinion of the patient. Not professional. If the patient wants to get a scan, let them. It's their health.

 

Oh wait...here is why. Said one doctor; "I don't have a legitimate excuse to get you a scan, it will make me look bad on the insurance company."
I the patient was going in for a scan of where my old tumor site is, I've never checked up on the tumor site and it's been 11 years. Now I'm having chest pain and fluttering, difficulty sleeping on my side again like when I had cancer. The doctor says "It's been too long, lymphoma wouldn't be your issue, being a stay at home mom is probably what's really going on, your just imagining your symptoms."

 

I think I need to report that oncologist. But I'm going to have mercy and let him do the CT scan. After that we'll see if he belittles me again. Then we'll see if I report him.

 

OTHER THAN ALL THAT....

 

My father-in law has asked his church for donations to help Matt and I with the bills. Out medical bills are getting pretty steep. The church, people we don't even know, have donated about a thousand dollars! WOW! So we are hoping to repay them some how. To say thank you more than just emailing a letter for the pastor to read. It's a Lutheran church so I'm not sure what's kosher. lol

 

Now....
I'm going in for a CT scan on the 19th.
I'll return to my Licensed Naturopathic doctor until we move.
We'll continue to boost my health and work with the information we have to help me be able to sleep on my side at night, maintain my diet changes and supplement anything that I'm lacking in so my body and repair better.

2 2


0 Comments


Recommended Comments

There are no comments to display.

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
  • Latest Blog Entries

    • By Eab12 in Eab12
         2
      I was on very low carb diet late summer early Fall into winter.  At Christmas I came off and ate Christmas sweets, cookies, etc, etc... so good. By New Years I began with severe diarrhea with urgency.  Extremely fatigued, my physician started me on doxycycline, no help, put on lomotil, motofen- no help. Then started questran.  No help. Used verbizi, bentyl.  Not much better.  Had egd and bx showed villous atrophy.  But the antibody lab test for celiac was negative.  The dq2 and dq8 genetic testing showed dq2 positive, but dq8 negative. I also had microscopic colitis in the sigmoid at the same time. All other lab work was WNL.  No physician with straight up tell me yes “definitely “ celiac.  I don’t understand why the gluten antibody test was negative, when the biopsy pointed to it.  I’m so confused and wishing the doctors would say yes this is what it is, and if you follow diet, all will be fine.  I’ve been gluten free 4 weeks now.  Feel better, no real diarrhea like before, but would like to get definite answer.  My family has some immunological diseases such as lupus, RA, diabetes, but no celiac.  Anyone else have contradictory findings?
    • By Scott Adams in Gluten Busters: Gluten-Free Product Alerts by Celiac.com
         0
      Today, Nature’s Path Foods announced a voluntary recall of a specific production run of EnviroKidz Choco Chimps, Gorilla Munch and Jungle Munch cereals for they may contain undeclared gluten (wheat and barley). People who have a wheat allergy, celiac disease or sensitivity to gluten and wheat should not consume the cereals with the BEST BEFORE DATE listed below due to potential adverse health effects. Nature’s Path is also removing any affected cereals from customer store shelves and warehouses.
      United States
      Product Name – United States Size UPC Best Before Date EnviroKidz Choco Chimp 10 oz 0 5844987024 1 08/27/2019 EnviroKidz Gorilla Munch 10 oz 0 58449 86002 0 08/24/2019 EnviroKidz Gorilla Munch 10 oz 0 58449 86002 0 09/21/2019 EnviroKidz Jungle Munch 10 oz 0 5844987028 9 08/01/2019 Canada
      Product Name - Canada Size UPC Best Before Date EnviroKidz Choco Chimp 284 g 0 5844987023 4 08/27/2019 EnviroKidz Gorilla Munch 284 g 0 58449 86002 0 08/24/2019 EnviroKidz Jungle Munch 284 g 0 5844987027 2 08/01/2019 Shown below are the images of the product packaging associated with this recall.
      The error was isolated to one facility and due to air contamination as a result of incorrect production scheduling. Other gluten-free Nature’s Path and EnviroKidz products are not impacted and are not part of this voluntary recall. 
      Consumers requesting a refund for the affected cereals should return the product to their retailer. Consumers may also contact Nature’s Path Consumer Services at 1-866-880-7284 (between Monday and Friday, 8:00 am to 4:30 pm PST) or email at ConsumerServices@naturespath.com. 
      Making healthy, nutritious, organic food is our passion,” says Arjan Stephens, Executive VP of Sales & Marketing at Nature’s Path. “This failure to meet the gluten-free standard our consumers expect and trust from us is a deep concern. We have reviewed and changed our internal practices to ensure our gluten-free cereals are not impacted in the future.
    • By Trish McCleary in Pancreas and Celiac Disease Link?
         13
      If I only knew I had celiac disease long before I was finally diagnosed.  Now suffering celiac spru, gastroparesis and severe pancreatic insufficiency, I will never regain the full use of my pancreas.

      I am in the process of learning if the celiac or Lyme Disease was the biggest culprit in damage to my Pancreas.  I'll keep you posted if anyone wants to know.   My sons have been dianosed with Lyme and with the information on this site I've learned my youngest (16) may also have celiac disease.  Why it's taken his whole life for doctors to get it right I will never know but we're here now and gluten free looks to be in his future too.

      The article here relating celiac with pancreas issues is very interesting to me and is something I must look into for my son's welfare.  Thanks for information about what to look for in juvenile's!
      Blessings,
      Trish


  • Member Statistics

    • Total Members
      86,544
    • Most Online
      4,125

    Newest Member
    AlyssaAnn22
    Joined
  • Blog Statistics

    • Total Blogs
      1,158
    • Total Entries
      2,010
  • Who's Online (See full list)

    There are no registered users currently online

  • Blog Comments

    • Some celiacs are seronegative.  Some celiacs never test positive to the screening TTG.  Did you received the complete celiac panel (TTG, EMA and DGP)?  I test positive to only the DGP IgA even in follow-up testing.   Many things can cause villi damage: https://www.cureceliacdisease.org/faq/what-else-can-cause-damage-to-the-small-intestine-other-than-celiac-disease/ However, you probably have celiac disease because you have the genes and you are already improving on the gluten free diet.  Remain gluten free for a year and get retested.  Your doctor may then give you a firm diagnosis.  But you might find that feeling better is all the assurance you need.   Hey, I am the only diagnosed celiac in my family and they are riddled with autoimmune disorders like RA, Lupus, Crohn’s, Thyroiditis, etc.  
    • Eab12, This is a blog post. . . .you might not get much response here. You might want to start this as a thread in the forum section. Eating low carb .. .might of been low enough in gluten to lower your antibodies levels but enough to still attack your villi. . ... and villi don't heal right way anyway. Most people follow up on biopsy at a year to see if villi are still damaged ... and your's obviously still are. .... one confirms the other (often) and doctor's don't want to say absolutely you have celiac without them both being positive. But for you I would say "Positive" is positive. .. but doctor's want both of them to be positive to be sure of your diagnosis. . . but for me I was diagnosed by blood serology only.... this is more common (today) than it i used to be. If either is positive then you can be positive for celiac disease ...doctor's are trying to confirm it is not a "false" positive. See this huffpost article about this topic. https://www.huffpost.com/entry/gluten-what-you-dont-know_n_379089 You might want to have your stomach acid tested too ....being low in it can lead to inflammation. I hope this is helpful but it is not medical advice. Posterboy,
  • Forum Discussions

    Thank you GFinDC. Question. When you say, "quick rinse", can you define what is safe for us to use when washing our fruits and veggies? I know that might sound like something I should know but I am seriously taking no chances (at least not on purpose). I've been buying organic produce because I was told I needed to. Do you find that to be true or do I need to find a new nutritionist? 😉
    Hi Wade, You areright, there are lots of little gotchas out there in the gluten-filled world.  That's why it is easier/safer to stick with whole foods at the beginning of the gluten-free diet.  The list of ingredients on an apple or an orange or a steak is usually real short.  So you can get out of the grocery store quicker by eating whole foods like those.  Plain frozen veggies or canned are usually safe too.  And fresh produce as long as you give it a quick rinse.
    Why....why would your doctor not follow the standard of care for testing celiac disease?  I think you need to think about  finding another doctor.  If you are in the US, you can “walk” into a lab and order the test and pay cash: https://labtestsonline.org/tests/celiac-disease-antibody-tests No, your result does not significantly lower your odds of getting a celiac disease diagnosis.  She ordered the LEAST commonly used test, especially since she only ordered that one alone.  I think she thinks you do not have celiac disease, but that you may have a gluten sensitivity.  But that is wrong!  There is no test for gluten sensitivity.  http://www.cureceliacdisease.org/screening/ https://www.mayocliniclabs.com/it-mmfiles/Celiac_Disease_Diagnostic_Testing_Algorithm.pdf https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/ https://www.verywellhealth.com/celiac-disease-blood-tests-562694 https://www.niddk.nih.gov/health-information/diagnostic-tests/celiac-disease-health-care-professionals I am not a doctor though.  Perhaps, you can ask her why she did not order the complete panel or at least the screening tests most often ordered for celiac disease. Know that some celiacs are asymptomatic (no symptoms) Some just have one symptom.  Some have classic symptoms.  I presented with only anemia and no GI symptoms with only a positive on the DGP IgA.    I hope this helps.  
×