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

Blood Panel

steve-o

Recommended Posts

steve-o Apprentice
steve-o
Posted

Hi Everyone,

I'm new here....been lurking for a couple weeks, but this is my first post.

I have several of the classic symptoms of celiac disease, and my mother was recently diagnosed (blood and biopsy positive)....so I made an appointment with a GI doctor to get tested.

He didn't want to do a blood panel (I'm assuming because he was fairly sure it was celiac that is making me ill), so we went straight to the biopsy. He also had me start the gluten-free diet right after the biopsy, which was 8 days ago.

Well, the results are in, and the biopsy shows "everything is normal". So now I've asked that they do a blood panel to see if the antibodies suggest I have a "gluten intolerance", even though my biopsy is normal. I had to ask several times, but finally they agreed to send me to get a blood panel next week.

So by the time I do the blood panel next week, I'll have been gluten free for almost two weeks. He says this won't be a problem because you would have to be gluten-free for a lot longer than a couple weeks, for the blood panel results to be unreliable.

Does this sound right to you all? It seems like most of the info I've read, says you need gluten in your diet at the time the blood tests are done, or the tests will be skewed.

So I'm trying to decide if I should eat gluten all weekend, so I'll be good and toxic for my test next week. But if I don't need to, I don't want to, because it makes me sick. Since I've been gluten-free for only a week, I feel somewhat better, although I still don't feel particularly great...but my nausea / loose stools / reflux, have almost disappeared.

Thanks!

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

Celiac.com Sponsor (A8-M):


Carriefaith Enthusiast
Carriefaith
Posted

Welcome!

So I'm trying to decide if I should eat gluten all weekend, so I'll be good and toxic for my test next week.

It is possible that you may get a false negative blood test result if you have been gluten free for 2 weeks. If I were in your situation I would eat gluten until the test and then stop. It appears from your biopsy results that gluten isn't damaging you yet, unless the doctor missed damaged areas (villi damage can be patchy). However, if eating gluten is going to make you extremely ill then it probably isn't worth it. Another option: You could get an alllergy skin prick test that tests for food allergies to wheat, rye barely and oats... I don't think you need to be eating gluten for that. Or you could try enterolab Open Original Shared Link

Good luck B)

tarnalberry Community Regular
tarnalberry
Posted

It's a sliding slope. When does someone losing their hair become bald? Can you pinpoint a date? Same thing here. It might not be long enough, it might be. My results were inconclusive after two weeks gluten-free, and that might have been why, it might not have. Problem is, you can never be sure.

plantime Contributor
plantime
Posted

If he is only running the antibodies, being gluten-free could very easily mess up the results. If he is running the gene panel, then it doesn't matter how you are eating. If eating the gluten does not make you extremely ill, then I suggest you eat it. If it does make you ill, don't do that to yourself. You are an adult, you do not need a doctor's note or permission to eat glutenfree. Your health is your responsibility.

Emme999 Enthusiast
Emme999
Posted

If I were you, I would eat a high gluten diet until the tests. It's called the "gluten challenge" where you eat something with gluten in it at every meal - and also have grains for snacks (cookies, crackers, whatever). I think that since you've only been gluten-free for one week, this short time might be enough time to get things back to abnormal ;)

I did the gluten challenge thing for a couple weeks, it's hellish, but at least now I know!

Also - be aware of the difference between wheat allergy and celiac disease. A skin test *might* pick up the allergy, but it wont pick up celiac. I'm kind of anti skin test myself - I had one and it didn't pick up *any* of my food allergies. They actually only pick up "immediate onset" allergies - and most food allergies are delayed onset. So.. kind of useless if you ask me! (Are you asking? ;))

If it were my body, I would probably try to set the test back a week and eat a lot of gluten during that time to set up the situation. But - that's me! And I don't know if you have an extra week!

It's also up to you to decide if you feel that you need a doctors confirmation or not. I'm the kind of person who does. If I didn't have an "official" diagnosis, I would probably end up doubting myself and be more likely to cheat. Now that I've had both my general and my gastroenterology doctors tell me that I have celiac disease - there's no way I'll put my health at risk by purposely eating anything that might have gluten in it.

Best wishes to you!! :)

- Michelle :wub:

Guest nini
Guest nini
Posted

I don't like anyone recommending a gluten challenge or staying on gluten just to take a test. I NEARLY DIED EATING GLUTEN... I don't want that to happen to anyone else. If the symptoms are there and eating gluten free gets rid of the symptoms then what is the big reason for continuing to consume gluten to get a test that may or may not be conclusive?

If there are other diseases that the Dr.s are concerned about, then there are OTHER tests that can be done to rule them out... right?

steve-o Apprentice
steve-o
Posted
  • Author

Thanks to everybody for your insight and advice.

Personally, I'd prefer to a medical diagnosis, if possible...so I decided to go back on a gluten containing diet. I'm fortunate, in that I don't react as quickly or violently to gluten as many people on this board.

I've been eating lots of bread and whole wheat cereal for the past couple days. I didn't have an immediate reaction, but over the course of the first 48 hours back on gluten, my reflux and nausea are coming back. My bowel movements have also gone from normal to nasty.

The silver lining of going back on gluten, is that I now am sure that I have some degree of gluten intolerance....why else would all the symtoms come back? So regarldless of what the blood tests show....I'll be going gluten free.

I also plan on seeing an allergist, to be screening for any other possible food allergies.

Thanks again,

Steve

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

Celiac.com Sponsor (A8-M):


Magdeliscious Rookie
Magdeliscious
Posted

Job well done Steve.

You know your body better than anyone else.

all the best in finding a concrete diagnosis.

:)

Magdalena

baggotlane Rookie
baggotlane
Posted

I think you made the better choice Steve, even if it's not an open and shut case. As long as the reactions are not violent, which they do not seem to have been, it is worth taking gluten for several days. From what I understand a short time gluten-free for blood tests does not much much difference but you will at least have helped remove a cause of a possible negative result.

Good luck with the tests.

Andrew

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. knitty kitty
      - knitty kitty replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy. I hope you've been able to acquire thiamine hydrochloride or Benfotiamine. I'm concerned. Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the ...
    2. cristiana
      - cristiana replied to EssexMum's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

      Good evening @EssexMum You are quite right to be concerned about this situation. Once diagnosed as coeliac, always a coeliac, and the way to heal is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019. My spoken French isn't bad...
    3. EssexMum
      - EssexMum posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Concerning GP advice

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage. History: She had been having severe tummy pains on and off every...
    4. Florence Lillian
      - Florence Lillian replied to Florence Lillian's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    5. trents
      - trents replied to HectorConvector's topic in Related Issues & Disorders
      327

      Terrible Neurological Symptoms

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,632
    • Most Online (within 30 mins)
      7,748
    Kit Sunshine
    Newest Member
    Kit Sunshine
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Terrible Neurological Symptoms

      By knitty kitty · Posted

      @HectorConvector, Here are some articles about "dry Beriberi" and neuropathy.  I hope you've been able to acquire thiamine hydrochloride or Benfotiamine.  I'm concerned.   Dry Beriberi Due to Thiamine Deficiency Associated with Peripheral Neuropathy and Wernicke's Encephalopathy Mimicking Guillain-Barré syndrome: A Case Report and Review of the Literature https://pubmed.ncbi.nlm.nih.gov/30862772/ Dry Beriberi Manifesting as Acute Inflammatory Demyelinating Polyneuropathy in a Patient With Decompensated Alcohol-Induced Cirrhosis https://pmc.ncbi.nlm.nih.gov/articles/PMC7707918/ A Rare Case of Thiamine Deficiency Leading to Dry Beriberi, Peripheral Neuropathy, and Torsades De Pointes https://pmc.ncbi.nlm.nih.gov/articles/PMC10723625/
    • cristiana
      Concerning GP advice

      By cristiana · Posted

      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
    • EssexMum
      Concerning GP advice

      By EssexMum · Posted

      Hi, I am after some advice re my step daughter and her Coeliac Disease. She is 9 years old and had a very limited diet before being diagnosed (very fussy and very lenient parents), since being diagnosed it has become hard to find places out that will cater for her, but we manage.  History: She had been having severe tummy pains on and off every few months so had a bunch of tests and eventually was diagnosed with celiac disease a number of months ago. We was told that she is at a very high level and should avoid gluten for the rest of her lift, we was told that the gluten she has been eating has damaged the 'fingers' inside her and they will not replenish. We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesnt react to the gluten straight away, it will be a build up and then the pains start. We was advised that by her not reacting straight away, it did not mean it wasnt harming her inside. We was given literature about buying a separate toaster and cutting board etc to avoid cross contamination and have been checking all food labels etc.  Problem: the issue is the novelty seems to have worn off with her Mum and we are now posed with a situation. They are going on holiday to Disneyland Paris for 3 nights and she phoned the hotel who said they cannot cater for gluten free. She phoned the GP and had a conversation and then told my partner that the GP had said it was fine for her to have gluten for the 3-4 days. He questioned it and she said no its fine, she hasnt had it for months so a few days wont hurt and she exposed to it anyway without knowing so it will be fine and shes not ruining her holiday etc.   My partner could see from the online notes that his ex wife had told the doctor that the child does not follow a strict gluten-free diet anyway - not true. At least not with us! My partner requested a call with the same doctor who told him that it is the mums discretion and that the child should be monitored for reactions - he explained that the issue is she doesnt react straight away. The GP said no its all mums discretion and she knows best. We are going to try to speak to the consultant at the hospital, but I just wanted to gauge some thoughts. It just seems bizarre to me that we can go from being told to avoid gluten for the rest of her life and how harmful it is to her body, to now it being ok for her to have it for a few days. Thanks in advance  
    • Florence Lillian
      Gluten-Mimicking Proteins that can affect some Celiac individuals.

      By Florence Lillian · Posted

      Hi Scott: A wonderful, thoughtful explanation. Controlled human studies would be very interesting and quite informative. I have been eliminating certain foods and have narrowed it down considerably. Having other autoimmune diseases along with Celiac has become rather challenging. I appreciate your input, thank you. All the best, Florence
    • trents
      Terrible Neurological Symptoms

      By trents · Posted

      Hector, have you had a follow-up biopsy to check the progress of small bowel villous lining recovery after going gluten free?
×
×
  • 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.