Jump to content
  • You are not alone. Join Celiac.com for trusted gluten-free answers and forum support.



  • Celiac.com Sponsor (A1):
    Celiac.com Sponsor (A1-M):

Blood Panel


steve-o

Recommended Posts

steve-o Apprentice

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

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

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

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

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

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

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

Job well done Steve.

You know your body better than anyone else.

all the best in finding a concrete diagnosis.

:)

Magdalena

baggotlane Rookie

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.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - RMJ replied to Ginger38's topic in Coping with Celiac Disease
      5

      The Struggle Has Overtaken Me

    2. - Aretaeus Cappadocia replied to Ginger38's topic in Coping with Celiac Disease
      5

      The Struggle Has Overtaken Me

    3. - Aretaeus Cappadocia replied to Xravith's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten challenge - Need some guidance

    4. - Xravith posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Gluten challenge - Need some guidance

    5. - cristiana replied to cristiana's topic in Related Issues & Disorders
      3

      Low iron/high normal haemoglobin

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      134,179
    • Most Online (within 30 mins)
      10,442

    Nancy sirois
    Newest Member
    Nancy sirois
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.7k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • RMJ
      Ginger38, that sounds very difficult.  Each dietary restriction makes it harder to figure out what to eat. Before my celiac diagnosis I already watched out for my cholesterol level and migraine triggers, but those are much easier than diabetes restrictions. One “bad” meal isn’t that much of a problem for cholesterol levels, and my migraines only happened if I consistently ate the triggers. After many years I’ve figured out how to bake gluten free but I think many recipes have more starch which wouldn’t work for diabetes. If you go with the elephant eating analogy, I think the first portion to work on would be the diabetes, since the immediate consequences of not being careful (passing out from low blood sugar, or diabetic coma from high blood sugar) are so severe. The next portion would be celiac. The serious consequences aren’t as immediate, but if you have celiac disease, I think of eating gluten like a booster shot - revving up the immune system, but to attack yourself leading to long term damage. It sounds like you are experiencing this damage now. I did a google search on “gluten free food for diabetics” and a number of sites with advice came up.  If your insurance will cover it and you can find one, a registered dietician who knows about both diabetes and celiac disease might help you figure out what to eat safely. Hopefully my post will both scare and encourage you, as requested, with a big dose of compassion because this sounds very difficult and you are clearly suffering.
    • Aretaeus Cappadocia
      Reading the original post on this thread made me think of "How To Eat An Elephant". The key point is that a whole, big problem can seem insurmountable but if you break it into bite-sized pieces it is much easier to accomplish. Here is the google description. It's not bad: If you're facing a daunting goal, you can use these steps to "eat your elephant": Identify the Elephant: Clearly define the large project or goal that feels overwhelming. Break it Down: Divide the major task into smaller "bite-sized" pieces. If a piece still feels too big, break it down further. Prioritize: Decide which "bite" to take first based on necessity or impact. Focus on the Now: Instead of worrying about the whole animal, focus only on the single step you are taking right now. Maintain Consistency: Progress comes from taking the "next right step" every day until the task is complete. Celebrate Small Wins If I understood Ginger38's post correctly, you are facing the prospect of a gluten challenge, but you are already eating gluten on an intermittent basis. It also sounds like many of the symptoms you attribute to gluten consumption are in full expression. Step back and take a deep breath. Get a notebook and start a gluten-related diary. Don't try to make it perfect; just record what you can about food intake and what you experience as you go along. Talk to your Dr's office (nurse, Dr, whomever) about the challenge. The most rigorous challenge is for someone who has already gone truly gluten free but now needs a clear diagnosis. Someone who is already eating gluten should not need as much "challenge". Even at that, google describes an example challenge as 1-2 slice of bread or 1/2 cup of pasta a day. If that describes your existing diet you are already there. For the moment, try to focus on getting past the challenge and test. Once you have the results, start planning accordingly.
    • Aretaeus Cappadocia
      I don't know the answer to your question any better than a google search, but I am sure someone else will step up and answer. I am popping up to recommend that you keep a careful diary (in case you weren't already). Try to catalog what you are eating and experiencing. Bring a copy to your next visit (and if you have access to the Dr, also send a copy a couple days in advance). Don't assume that they will read it. They might, but they also might be under tremendous time pressure and not get to it. Two other suggestions: if your healthcare provider has a web portal, sign on and search for "gluten challenge". They may have a standard page and Dr assumed you would find it on your own. If that doesn't work, call the Dr's office and ask the office for their official advice. You probably wouldn't need to speak to the Dr directly. There should be some nurse or staff member who could answer that
    • Xravith
      After few months going gluten free, I decided to reintroduce gluten in my diet so I can do a proper diagnosis for Celiac disease. During the gluten free period I felt incredibly good. I stopped having hypoglycemia symptoms, I gained some muscle (Still, I am considerably underweight) and my anxiety totally disappeared. I felt totally like a new person. Now, I almost reached the second week of gluten challenge and all my symptoms are progressively coming back. The first days I was ok, just a bit of acid reflux I could control with medicines. However, after the first week I started to feel real stomach pain and tiredness, my face is growing acne and sometimes (specially when I walk) i feel painful migraines.  I am afraid If I am eating too much gluten or not enough, the "4 slices of bread" indication confuses me. I am actually eating 20 g of bread, 3 biscuits and 40 g of croissant each day. My doctor was not very specific when he gave me the medical order for the gluten challenge, so I invented my own daily gluten menu. Do you have any suggestions? 4 weeks will be enough to do the blood test with my current gluten intake?  Thank you
    • cristiana
      V. interesting. It might well explain the tiredness, and the increased headaches, then.   I'm trying to get my TTG numbers down a bit by avoiding eating out.  Hopefully then if I've healed more I guess I will be able to absorb more iron.  Will find out at the next blood test in the autumn. Thanks so much for your help.  
×
×
  • Create New...