Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

So Nervous... Endoscopy This Morning After Having A Weak Positive Blood Test Result..

abwredesign

Recommended Posts

abwredesign Newbie
abwredesign
Posted

I thank all of the people on this web site for getting me through days of anticipation. I have been reading about this for days. I am leaving soon for an endoscopy. I am so nervous. I really hope that this is the answer to all of the "issues" that I have lived with for over 20 years! I read these posts and relate to so many of you! My story: Colitis diagnosis after the birth of my son, 21 years ago. needless to say, many bowel problems, all that have been described on this site. Low Thyroid. Hair loss. Osteopenia. Just recently, went to a rheumatologist for what I thought was arthritis, swelling in my wrist, pain and swelling in my thumb joints, back pain, pain all over. He took blood, the results showing a vitamin D deficiency. He then sent me for more blood work, suspecting Celiacs. Imagine my shock when the results came back as weak positive, no arthritis.

That brings me to today. I have made the decision to try a gluten free diet regardless of the biopsy results. I am writing because of the confusion. the rheumatologist said that a positive is a positive, The gastro that I was referred to , who took more blood for genetic testing etc. said not necessarily. I am so confused. Have you all had this type of mixed messaging from Doctors? I have been given a referral for a nutritionist as well. Help!! I am not sure what to think, but know that I have to be patient. Does anyone understand what a weak positive means???

Thank you for reading this and look forward to your responses....

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

Celiac.com Sponsor (A8-M):


abwredesign Newbie
abwredesign
Posted
  • Author
I thank all of the people on this web site for getting me through days of anticipation. I have been reading about this for days. I am leaving soon for an endoscopy. I am so nervous. I really hope that this is the answer to all of the "issues" that I have lived with for over 20 years! I read these posts and relate to so many of you! My story: Colitis diagnosis after the birth of my son, 21 years ago. needless to say, many bowel problems, all that have been described on this site. Low Thyroid. Hair loss. Osteopenia. Just recently, went to a rheumatologist for what I thought was arthritis, swelling in my wrist, pain and swelling in my thumb joints, back pain, pain all over. He took blood, the results showing a vitamin D deficiency. He then sent me for more blood work, suspecting Celiacs. Imagine my shock when the results came back as weak positive, no arthritis.

That brings me to today. I have made the decision to try a gluten free diet regardless of the biopsy results. I am writing because of the confusion. the rheumatologist said that a positive is a positive, The gastro that I was referred to , who took more blood for genetic testing etc. said not necessarily. I am so confused. Have you all had this type of mixed messaging from Doctors? I have been given a referral for a nutritionist as well. Help!! I am not sure what to think, but know that I have to be patient. Does anyone understand what a weak positive means???

Thank you for reading this and look forward to your responses....

got back from procedure. findings :gastric polyp and possible area of narrowing at the D1/D2 level. Will have to wait a week or so for the celiac result. Anyone understand this?? Thanks.

momxyz Contributor
momxyz
Posted

There are several antibodies that could be tested for. Do you know the name of the specific test that was weakly positive?

Gemini Experienced
Gemini
Posted
I thank all of the people on this web site for getting me through days of anticipation. I have been reading about this for days. I am leaving soon for an endoscopy. I am so nervous. I really hope that this is the answer to all of the "issues" that I have lived with for over 20 years! I read these posts and relate to so many of you! My story: Colitis diagnosis after the birth of my son, 21 years ago. needless to say, many bowel problems, all that have been described on this site. Low Thyroid. Hair loss. Osteopenia. Just recently, went to a rheumatologist for what I thought was arthritis, swelling in my wrist, pain and swelling in my thumb joints, back pain, pain all over. He took blood, the results showing a vitamin D deficiency. He then sent me for more blood work, suspecting Celiacs. Imagine my shock when the results came back as weak positive, no arthritis.

That brings me to today. I have made the decision to try a gluten free diet regardless of the biopsy results. I am writing because of the confusion. the rheumatologist said that a positive is a positive, The gastro that I was referred to , who took more blood for genetic testing etc. said not necessarily. I am so confused. Have you all had this type of mixed messaging from Doctors? I have been given a referral for a nutritionist as well. Help!! I am not sure what to think, but know that I have to be patient. Does anyone understand what a weak positive means???

Thank you for reading this and look forward to your responses....

This is extremely common and I'll tell you why. The gastro doc is the one who will want to do an endo, not only to complete all the testing protocol that was drilled into his head during med school but because, and here is the issue that upsets some people, he makes lots of money doing endoscopies. Not to say doctors are all evil money mongers BUT the doctor will make a large amount of money, directly to him, for doing the test. Doctors are in business to help people but they also need to make money, like everyone else.

Your Rheumatologist is correct....a positive is a positive and with all your other symptoms combined, I would say that you are 99% sure of being a Celiac.

Having the endo is really up to the patient. You may want to have one because some people need to see damaged villi on a photograph for dietary compliance and to put their mind at ease about the diagnosis. For those with very high test scores and symptoms, where it's obvious they have a gluten problem, they may choose to skip directly to the diet.

A weak positive means that your numbers were probably lower on the test but high enough to be out of range for normal. You may not have accrued enough damage yet for the blood work to show very positive but it still means you are making antibodies to gluten. A huge word of caution......if you have a weak positive blood test, it could possibly mean that your endoscopy may come back negative. This does NOT mean you do not have celiac disease!!!!!!!! Damage can be patchy and doctors may miss damage if they take only a few samples. It's a real problem for some. Unless you have major gut damage, it could make it very hard to diagnose celiac disease. The real test will come when you do a dietary trial. If the gastro tells you it's negative for celiac disease, do the dietary trial anyway and take what he says with a grain of salt. Sounds like your Rheumatologist is better at it than the gastro so you may want to talk to him again.

Good luck!

abwredesign Newbie
abwredesign
Posted
  • Author
There are several antibodies that could be tested for. Do you know the name of the specific test that was weakly positive?

I think it was IGA?? the # was 25, I was told that 20 - 30 is considered a weak positive. spoke with the Dr. this afternoon, and she did say that she repeated the test, I will have all the blood work results later in the week. Thank you!

abwredesign Newbie
abwredesign
Posted
  • Author
This is extremely common and I'll tell you why. The gastro doc is the one who will want to do an endo, not only to complete all the testing protocol that was drilled into his head during med school but because, and here is the issue that upsets some people, he makes lots of money doing endoscopies. Not to say doctors are all evil money mongers BUT the doctor will make a large amount of money, directly to him, for doing the test. Doctors are in business to help people but they also need to make money, like everyone else.

Your Rheumatologist is correct....a positive is a positive and with all your other symptoms combined, I would say that you are 99% sure of being a Celiac.

Having the endo is really up to the patient. You may want to have one because some people need to see damaged villi on a photograph for dietary compliance and to put their mind at ease about the diagnosis. For those with very high test scores and symptoms, where it's obvious they have a gluten problem, they may choose to skip directly to the diet.

A weak positive means that your numbers were probably lower on the test but high enough to be out of range for normal. You may not have accrued enough damage yet for the blood work to show very positive but it still means you are making antibodies to gluten. A huge word of caution......if you have a weak positive blood test, it could possibly mean that your endoscopy may come back negative. This does NOT mean you do not have celiac disease!!!!!!!! Damage can be patchy and doctors may miss damage if they take only a few samples. It's a real problem for some. Unless you have major gut damage, it could make it very hard to diagnose celiac disease. The real test will come when you do a dietary trial. If the gastro tells you it's negative for celiac disease, do the dietary trial anyway and take what he says with a grain of salt. Sounds like your Rheumatologist is better at it than the gastro so you may want to talk to him again.

Good luck!

thank you for your response. I am lucky, my Dr. called me this afternoon and agrees that I should try a Gluten free diet. She is pro-active and I am really happy with the care that I am getting. I have an appointment with a nutritionist tomorrow afternoon. i think you are correct about the Rheumatologist-I do have a follow-up with him after the 8 weeks of vitamin D is finished. I am hoping this diet will change how I feel!!

Gemini Experienced
Gemini
Posted
thank you for your response. I am lucky, my Dr. called me this afternoon and agrees that I should try a Gluten free diet. She is pro-active and I am really happy with the care that I am getting. I have an appointment with a nutritionist tomorrow afternoon. i think you are correct about the Rheumatologist-I do have a follow-up with him after the 8 weeks of vitamin D is finished. I am hoping this diet will change how I feel!!

Good luck to you....it sounds like you are well on your way to the gluten-free lifestyle! If gluten is your problem, you will be amazed at all the little and large problems

that may actually go away just by eliminating gluten from your diet. It can be life changing! If you need any help with the food aspect of it, just ask here. You'll get better idea's than at most doctor's offices! ;)

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Seeeye
    Newest Member
    Seeeye
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…                 
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Bread choice for a newbie

      By Kris2093u4 · Posted

      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...