Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Awaiting Labs, Possibly Celiac

adeline

Recommended Posts

adeline Newbie
adeline
Posted

Hi all, just introducing myself. I had a celiac panel pulled Wednesday, I will have access to everything once the results are back, I just don't know the specific tests that were pulled. I should know better, as I have thyroid disease and had to push to get my doc to test more than TSH and FT4. Anyway...

 

I have been having issues for probably 6 months now. I was diagnosed hypothyroid in October 2012, and while I am doing well with my medication, I never feel like I fully recovered. The past 6 months, I've dropped a drastic amount of weight (from 120 at the height of hypothyroid to about 90 a few weeks ago), have had off and on night sweats (frequent and drenching in the past month), stabbing gut pains, and crazy itchiness all over my legs that leads to me scraping layers of skin off. It looks patchy and spotted by the time I'm done. The main problem has been my inability to eat, which has contributed to the weight loss greatly.

 

My appetite is mostly normal!! But I will start to eat, get a few bites in, maybe a quarter of the way through a meal, and my stomach just stops. It churns and it lurches and I start feeling sick. I haven't actually vomited as a result of this, but I feel like it could happen. Swallowing becomes difficult and I get a couple bites in before I know I'm done. It is SO frustrating.

 

For the past month or so, i've been supplementing with Ensure Plus and Luna bars, I've subscribed to Graze and Love with Food boxes, and keep nuts and snacks on hand. Just to take in extra calories, good foods. I went from eating out 95% of the time to eating in 95% of the time this month. It's been easy and a great change, but lots of sandwiches and pasta. I have gained back 10lbs so far!

 

My tonsils, ugh, have been awful war zones for the past couple years but have been AWFUL these past few months. I don't know if it's worse with gluten or dairy, but it's probably both. When a now ex of mine used to cook with heavy cream, I'd be in the bathroom right after dinner, so I think it's safe to say I'm lactose intolerant. But I don't avoid dairy. I guess it's time to make more changes.

 

I did a gluten free trial in October. For 3 weeks or a little longer. I started feeling better (especially around meal time), but a few weeks after resuming gluten, it all came back. I've been under a crazy amount of stress recently with my job, and life in general, so yes, I am just now following up with the doctor.

 

My GP ran a celiac panel as well as a test for H. Pylori, both were things she mentioned as I described my symptoms. I am now patiently waiting for my test results. I am terrified of the results, mostly because of the ramifications this is going to have on the rest of my health.

 

Other things of consideration: I am chronically Vit D deficient and usually need to supplement D3 to make my GP happy. Also my cholesterol has been on the rise for the past 2 years.

 

So, hello everyone!

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


cyclinglady Grand Master
cyclinglady
Posted

Welcome. Keep us posted on your results! Keep eating gluten in case you need a biopsy.

KayM Rookie
KayM
Posted

Hello

I too am in the same boat. I am actually waiting on insurance to approve the test so I can proceed. I have been gluten free for almost a year and improving by leaps and bounds its nice to feel normal. I only just got to see the dr. and after all the history review on family and such plus my symptoms and improvement she is pretty sure that is what the problem is.

 

I have struggled my whole life with digestive issues. feeling foggy distracted, headaches, painful joints all that fun stuff, I was doing some research and came across some info on gluten and started looking into it. I met with my regular family dr. and talked to her and she agreed it was worth a try and wow what a difference. I am older though and not sure what damage I will face. Now that I have talked with a GI dr. I am convinced I did the right thing and she said I need this test so I know.  I know its awful probably to be relieved that you have something, but for me I guess its a relief to know that all this can change and I can feel normal for the first time. Hope all goes well and quick for you praying you get some answers. :)

kareng Grand Master
kareng
Posted

Hello

I too am in the same boat. I am actually waiting on insurance to approve the test so I can proceed. I have been gluten free for almost a year and improving by leaps and bounds its nice to feel normal. I only just got to see the dr. and after all the history review on family and such plus my symptoms and improvement she is pretty sure that is what the problem is.

 

I have struggled my whole life with digestive issues. feeling foggy distracted, headaches, painful joints all that fun stuff, I was doing some research and came across some info on gluten and started looking into it. I met with my regular family dr. and talked to her and she agreed it was worth a try and wow what a difference. I am older though and not sure what damage I will face. Now that I have talked with a GI dr. I am convinced I did the right thing and she said I need this test so I know.  I know its awful probably to be relieved that you have something, but for me I guess its a relief to know that all this can change and I can feel normal for the first time. Hope all goes well and quick for you praying you get some answers. :)

You have been gluten-free for a year? No point in taking the blood test. Even if you have celiac it should come back negative. You need to have been eating gluten for a while to make the antibodies that show up in the blood test. It's a shame doctors have no clue.

cyclinglady Grand Master
cyclinglady
Posted

Yes, chances are you are healed. Most assuredly your blood tests will not be accurate. The good news is that you are now avoiding most complications.

So, based on your year of being gluten free and seeing improvement, continue to stay the course. You can think about testing your kids or siblings. Again they must be eating gluten!

By the way, I am officially diagnosed, but my husband is not (uninformed doctors like yours). He has been gluten-free for 13 years and is healthy!

  • 2 months later...
KayM Rookie
KayM
Posted

Does anyone know if it will help if a close family member is diagnosed My dad is being tested have not heard back yet. He is in his seventies and had GI issues like this for years  in his late sixties he was rushed to er for sever cramping and vomiting and ct scan showed 11 inches of small intestine dead , blocked everything, so straight into surgery and then they said he had chronze disease. wel,l heard later He had a wheat allergy from when he was young so he told his dr. about me and they were very interested to test him so we will see. Both of my kids now 20 and 22 have digestive issues too so I have encouraged them to get tested while they are still on our insurance.

cyclinglady Grand Master
cyclinglady
Posted

I think it helps a lot! Family members will not have to suffer for years before getting a diagnosis.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


KayM Rookie
KayM
Posted

I think it helps a lot! Family members will not have to suffer for years before getting a diagnosis.

Yes and I was hoping it would help them know more so I can be diagnosed too one way or the other. 

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Get tested for vitamin deficiencies. Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    2. Colleen H
      - Colleen H replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      Thank you so much for your response Yes it seems as though things get very painful as time goes on. I'm not eating gluten as far as I know. However, I'm not sure of cross contamination. My system seems to weaken to hidden spices and other possibilities. ??? if cross contamination is possible...I am in a super sensitive mode of celiac disease...
    3. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not...
    4. AlwaysLearning
      - AlwaysLearning replied to Jmartes71's topic in Coping with Celiac Disease
      4

      My only proof

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does m...
    5. AlwaysLearning
      - AlwaysLearning replied to Colleen H's topic in Coping with Celiac Disease
      3

      Gluten related ??

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,084
    • Most Online (within 30 mins)
      7,748
    bigwave
    Newest Member
    bigwave
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      Get tested for vitamin deficiencies.  Though neuropathy can be a symptom of celiac, it can also be caused by deficiencies due to poor digestion caused by celiac and could be easier to treat.
    • Colleen H
      Gluten related ??

      By Colleen H · Posted

      Thank you so much for your response  Yes it seems as though things get very painful as time goes on.  I'm not eating gluten as far as I know.  However, I'm not sure of cross contamination.  My system seems to weaken to hidden spices and other possibilities. ???  if cross contamination is possible...I am in a super sensitive mode of celiac disease.. Neuropathy from head to toes
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      EXACTLY! I was asked yesterday on my LAST video call with Standford and I stated exactly yes absolutely this is why I need the name! One, get proper care, two, not get worse.Im falling apart, stressed out, in pain and just opened email from Stanford stating I was rude ect.I want that video reviewed by higher ups and see if that women still has a job or not.Im saying this because I've been medically screwed and asking for help because bills don't pay itself. This could be malpratice siit but im not good at finding lawyers
    • AlwaysLearning
      My only proof

      By AlwaysLearning · Posted

      We feel your pain. It took me 20+ years of regularly going to doctors desperate for answers only to be told there was nothing wrong with me … when I was 20 pounds underweight, suffering from severe nutritional deficiencies, and in a great deal of pain. I had to figure it out for myself. If you're in the U.S., not having an official diagnosis does mean you can't claim a tax deduction for the extra expense of gluten-free foods. But it can also be a good thing. Pre-existing conditions might be a reason why a health insurance company might reject your application or charge you more money. No official diagnosis means you don't have a pre-existing condition. I really hope you don't live in the U.S. and don't have these challenges. Do you need an official diagnosis for a specific reason? Else, I wouldn't worry about it. As long as you're diligent in remaining gluten free, your body should be healing as much as possible so there isn't much else you could do anyway. And there are plenty of us out here who never got that official diagnosis because we couldn't eat enough gluten to get tested. Now that the IL-2 test is available, I suppose I could take it, but I don't feel the need. Someone else not believing me really isn't my problem as long as I can stay in control of my own food.
    • AlwaysLearning
      Gluten related ??

      By AlwaysLearning · Posted

      If you're just starting out in being gluten free, I would expect it to take months before you learned enough about hidden sources of gluten before you stopped making major mistakes. Ice cream? Not safe unless they say it is gluten free. Spaghetti sauce? Not safe unless is says gluten-free. Natural ingredients? Who knows what's in there. You pretty much need to cook with whole ingredients yourself to avoid it completely. Most gluten-free products should be safe, but while you're in the hypersensitive phase right after going gluten free, you may notice that when something like a microwave meal seems to not be gluten-free … then you find out that it is produced in a shared facility where it can become contaminated. My reactions were much-more severe after going gluten free. The analogy that I use is that you had a whole army of soldiers waiting for some gluten to attack, and now that you took away their target, when the stragglers from the gluten army accidentally wander onto the battlefield, you still have your entire army going out and attacking them. Expect it to take two years before all of the training facilities that were producing your soldiers have fallen into disrepair and are no longer producing soldiers. But that is two years after you stop accidentally glutening yourself. Every time you do eat gluten, another training facility can be built and more soldiers will be waiting to attack. Good luck figuring things out.   
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.