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
      132,397
    • Most Online (within 30 mins)
      7,748
    Megannnnn
    Newest Member
    Megannnnn
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

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



  • Celiac.com Sponsor (A21):


  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • Scott Adams
      Coeliac UK Research Conference 2025

      By Scott Adams · Posted

      Thanks for sharing this!
    • Scott Adams
      Shingles - Could It Be Related to Gluten/ Celiac

      By Scott Adams · Posted

      I had the same thing happen to me at around your age, and to this day it's the most painful experience I've ever had. For me it was the right side of my head, above my ear, running from my nerves in my neck. For years before my outbreak I felt a tingling sensation shooting along the exact nerves that ended up exactly where the shingles blisters appeared. I highly recommend the two shot shingles vaccine as soon as your turn 50--I did this because I started to get the same tingling sensations in the same area, and after the vaccines I've never felt that again.  As you likely know, shingles is caused by chicken pox, which was once though of as one of those harmless childhood viruses that everyone should catch in the wild--little did they know that it can stay in your nervous system for your entire life, and cause major issues as you age.
    • trents
      Blood tests low iGA 4 years later digestive issues

      By trents · Posted

      Keep us posted.
    • Clear2me
      Gluten free nuts

      By Clear2me · Posted

      Thanks for the info. I recently moved to CA from Wyoming and in that western region the Costco and Sam's /Walmart Brands have many nuts and more products that are labeled gluten free. I was told it's because those products are packaged and processed  in different  plants. Some plants can be labeled  gluten free because the plant does not also package gluten products and they know that for example the trucks, containers equipment are not used to handle wheat, barely or Rye. The Walmart butter in the western region says gluten free but not here. Most of The Kirkland and Members Mark brands in CA say they are from Vietnam. That's not the case in Wyoming and Colorado. I've spoken to customer service at the stores here in California. They were not helpful. I check labels every time I go to the store. The stores where I am are a Sh*tshow. The Magalopoly grocery chain Vons/Safeway/Albertsons, etc. are the same. Fishers and Planters brands no longer say gluten free. It could be regional. There are nuts with sugar coatings and fruit and nut mixes at the big chains that are labeled gluten free but I don't want the fruit or sugar.  It's so difficult I am considering moving again. I thought it would be easier to find safe food in a more populated area. It's actually worse.  I was undiagnosed for most of my life but not because I didn't try to figure it out. So I have had all the complications possible. I don't have any spare organs left.  No a little gluten will hurt you. The autoimmune process continues to destroy your organs though you may not feel it. If you are getting a little all the time and as much as we try we probably all are and so the damage is happening. Now the FDA has pretty much abandoned celiacs. There are no requirements for labeling for common allergens on medications. All the generic drugs made outside the US are not regulated for common allergens and the FDA is taking the last gluten free porcine Thyroid med, NP Thyroid, off the market in 2026. I was being glutened by a generic levothyroxin. The insurance wouldn't pay for the gluten free brand any longer because the FDA took them all off their approved formulary. So now I am paying $147 out of pocket for NP Thyroid but shortly I will have no safe choice. Other people with allergies should be aware that these foreign generic pharmaceutical producers are using ground shellfish shell as pill coatings and anti-desicants. The FDA knows this but  now just waits for consumers to complain or die. The take over of Wholefoods by Amazon destroyed a very reliable source of good high quality food for people with allergies and for people who wanted good reliably organic food. Bezos thought  he could make a fortune off people who were paying alot for organic and allergen free food by substituting cheap brands from Thailand. He didn't understand who the customers were who were willing to pay more for that food and why. I went from spending hundreds to nothing because Bezo removed every single trusted brand that I was buying. Now they are closing Whole foods stores across the country. In CA, Mill Valley store (closed July 2025) and the National Blvd. store in West Los Angeles (closed October 2025). The Cupertino store will close.  In recent years I have learned to be careful and trust no one. I have been deleberately glutened in a restaurant that was my favorite (a new employee). The Chef owner was not in the kitchen that night. I've had  a metal scouring pad cut up over my food.The chain offered gluten free dishes but it only takes one crazy who thinks you're a problem as a food fadist. Good thing I always look. Good thing they didn't do that to food going to a child with a busy mom.  I give big tips and apologize for having to ask in restaurants but mental illness seem to be rampant. I've learn the hard way.          I don't buy any processed food that doesn't say gluten free.  I am a life long Catholic. I worked for the Church while at college. I don't go to Church anymore because the men at the top decided Jesus is gluten. The special hosts are gluten less not gluten free. No I can't drink wine after people with gluten in their mouth and a variety of deadly germs. I have been abandoned and excluded by my Church/Family.  Having nearly died several times, safe food is paramount. If your immune system collapses as mine did, you get sepsis. It can kill you very quickly. I spent 5 days unconscious and had to have my appendix and gall bladder removed because they were necrotic. I was 25. They didn't figure out I had celiac till I was 53. No one will take the time to tell you what can happen when your immune system gets overwhelmed from its constant fighting the gluten and just stops. It is miserable that our food is processed so carelessly. Our food in many aspects is not safe. And the merging of all the grocery chains has made it far worse. Its a disaster. Krogers also recently purchased Vitacost where I was getting the products I could no longer get at Whole Foods. Kroger is eliminating those products from Vitacost just a Bezos did from WF. I am looking for reliable and certified sources for nuts. I have lived the worst consequences of the disease and being exposed unknowingly and maliciously. Once I was diagnosed I learned way more than anyone should have to about the food industry.  I don't do gray areas. And now I dont eat out except very rarely.  I have not eaten fast food for 30 years before the celiac diagnosis. Gluten aside..... It's not food and it's not safe.  No one has got our backs. Sharing safe food sources is one thing we can do to try to be safe.        
    • Mmoc
      Blood tests low iGA 4 years later digestive issues

      By Mmoc · Posted

      Thank you kindly for your response. I have since gotten the other type of bloods done and am awaiting results. 
×
×
  • 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.