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
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,918
    • Most Online (within 30 mins)
      7,748
    Dizzyma
    Newest Member
    Dizzyma
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
×
×
  • 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.