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

Can 2 Negatives And A Weak + Mean Celiac?


Guest lostweekend

Recommended Posts

Guest lostweekend

Hello, I am new here. I have had stomach problems for about 15 years now which have slowly gotten worse over time. I was always told I have IBS. About 3 years ago I got some bloodwork done and my doctor tested me for celiac. She said 2 were negative and one was weakly positive at a 28. I went and saw a GI who said "You are not Irish, you're not super thin, I see 100 people a month like you, it's IBS". I didn't follow up with it and left the office. So skip to this year, the balls of my feet hurt so bad in the morning I can barely make it down the stairs, I'm tired a lot, my one hand feels sore in the joints all the time and my mental health has gone to the birds. My anxiety has been so high that I was put on Xanax and the therapist I am seeing thinks I have obessive-compulsive disorder. This is very upsetting because for 29 years of my life other than the IBS I haven't been mentally unstable at all. My question to anyone whose read this far (and thank you if you have) is it possible to have 2 negative and a weak positive and have celiac? I just got some bloodwork done again and won't know until tomorrow or Monday but I was off gluten for a week and the doctor said "Oh that won't affect it" when I keep thinking it will.

Any advice or comments are appreciated. Thank you-


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor
Hello, I am new here. I have had stomach problems for about 15 years now which have slowly gotten worse over time. I was always told I have IBS. About 3 years ago I got some bloodwork done and my doctor tested me for celiac. She said 2 were negative and one was weakly positive at a 28. I went and saw a GI who said "You are not Irish, you're not super thin, I see 100 people a month like you, it's IBS". I didn't follow up with it and left the office. So skip to this year, the balls of my feet hurt so bad in the morning I can barely make it down the stairs, I'm tired a lot, my one hand feels sore in the joints all the time and my mental health has gone to the birds. My anxiety has been so high that I was put on Xanax and the therapist I am seeing thinks I have obessive-compulsive disorder. This is very upsetting because for 29 years of my life other than the IBS I haven't been mentally unstable at all. My question to anyone whose read this far (and thank you if you have) is it possible to have 2 negative and a weak positive and have celiac? I just got some bloodwork done again and won't know until tomorrow or Monday but I was off gluten for a week and the doctor said "Oh that won't affect it" when I keep thinking it will.

Any advice or comments are appreciated. Thank you-

YES it is also possible to have all the tests come out negative and still have full blown celiac (raise my hands waving). You should get onto the diet as soon as you can and welcome to the boards. I am sure you will find them very helpful.

CarlaB Enthusiast

My blood tests and endoscopy were both negative. I went to Enterolab and got a strong positive. I feel like a different person now that I'm off gluten.

Guest lostweekend
My blood tests and endoscopy were both negative. I went to Enterolab and got a strong positive. I feel like a different person now that I'm off gluten.

How do you feel different? What has changed? I am just nervous because I'd like to have an answer to pinpoint all my anxiety lately. I've heard sometimes celiac disease can affect your mental health but I didn't really find exactly how. How much was the test you confimed yourself with? Thank you.

YES it is also possible to have all the tests come out negative and still have full blown celiac (raise my hands waving). You should get onto the diet as soon as you can and welcome to the boards. I am sure you will find them very helpful.

I did start the diet but then went off for 3 days. I felt horrible, I woke up with such bad mood swings and aches in my feet again. Sometimes I often wonder if everyone just sorta feels achey or tired from time to time or if it's just me. I'm 29 and feel like I've aged in dog years.

Kaycee Collaborator

I personally find it quite offensive, that even though one test returned weakly positive, the doctor said if you weren't Irish and not superthin, then it must be IBS!

I am not superthin, nor am I Irish, just a teeny bit. But coeliacs come in all shapes and sizes!

I was diagnosed as weakly positive, and that was after 6 weeks being gluten free, and have stuck to the gluten free diet as well as I can. I have had two more blood tests and both still came back weakly positive. So I have been trying extra hard to avoid it at all costs, but it must be getting in somewhere. And now, I know whenever I eat a bit of gluten, as it makes me ill. I must admit I was not terribly ill with coeliac before, but now the gluten hits me like a ton of bricks.

About mental capacity. When I eat gluten I just feel so out of it. Make silly mistakes and get my words muddled up, and at times get a bit depressed, probably at my stupidity. It seems to be only temporary, but it is so frustrating. Family and friends think it is funny. But it is a worry when I am driving and I feel out of it. Should I let everybody know when I have been glutened and let them know when I am on the road?

I also get the aches and pains from gluten. Not too bad, but more like what it used to be, achy joints. I have found I have a brain after all, as I get headaches now too. I know I am just falling apart, but I am learning so much about myself, and it is good. I too now suffer from anxiety attacks, especially when I think too much about food.

So much for the cool calm collected person I was without too many worries. I think what gets me through is my sense of humour. It is a bit dry and can take a bit of getting used to, but I know I am having a bad day when that has gone.

Laughter is the best medicine, so try and find your sense of humour again, watch a funny movie. Ask for everybody's favourite joke. Just a thought.

The soreness in the balls of your feet could be spur heels. Does it get better as the day goes on, which they usually do, and then absolute agony the next day.

Hope this makes you feel better, but I wouldn't write off coeliac for yourself just yet.

Good luck with your blood test results. I don't know if you want them positive or not, but if they were, it would make sense for all the symptoms you have.

God Bless

Cathy

BRUMI1968 Collaborator

One of the super fun things about Celiac, is that your absorption of necessary vitamins and minerals is nil. Thus, the symptoms of Celiac can be just about anything caused by malnutrition.

I had aching thighs and low back, and I think it turned out to be serious Vitamin B12 deficiency. If you haven't been checked for that, you should be.

I have been told I have IBS since I was in my teens (I'm 37) -- making it about 33 years or so I think I've probably had Celiac. Personally, and I know not all folks agree with me on this, I think IBS is a stand in for "I don't know what's wrong with you, and either me or your insurance company are unwilling to do the appropriate testing to find out what is irritating your bowels". You know your system is irritated for crying out loud...you want to know why.

So a month ago I asked for a Celiac panel myself. One of them came back positive (35 when 20-30 is mostly positive, and anything above is definite) and the other three bits of the test came back negative. I went on gluten free right away, and certain things got better instantly. I stopped itching. I started sleeping through the night (never even noticed that I hadn't been). My canker sores went away. Other things got worse - I became constipated for the first time in years (I have always been on the constipation [C] end of Celiac, but after quitting wheat [not gluten] two years ago, that had gotten better), and I felt emotionally drained. BUT...after I started getting the B12 shots and taking vitamins sublingually (under the tongue), i started to feel better. And after adjusting my diet to include more fiber and some probiotics, the C went away too. I feel as though I'm on the mend.

The mental fog and emotional rawness come and go. But the ANXIETY, for me, is gone. That disappeared when I quit wheat.

Anyway, I've rambed, but felt like what you've said really rung a bell with me. One thing I didn't expect with stopping the gluten - I hardly ever think about my stomach anymore. I realized that for years, my stomach has ALWAYS been on my mind.

Anyway, I'm glad you're here and I hope you decide to try the gluten-free diet no matter what your diagnosis. As far as I can tell, the grains that folks think of of as "alternatives" or for hippies or whatever, are better for you anyway...and taste good too.

nettiebeads Apprentice

Oh, yes celiac can cause major brain problems. For me, when I've had gluten, I get major "fog", depression, irritiablity - My husband's breathing will make me want to jump out of my skin. My dr is of the opinion that the current common tests for celiac probably aren't sensitive enough to be completely reliable. There may be more things that could be tested but the medical community doesn't know about them yet. And believe it or not, there is a growing faction in the medical field that thinks that the diet challenge is the most accurate test. You feel lousy, lots of stomach and intenstinal problems along with aches and pains. You go gluten free for three weeks or so. If you reintroduce gluten and the same old problems reappear, you got celiac! You alone know your body the best. If you felt better while gluten-free, then you've got problems with gluten. Watch out for all the other places gluten can hide like in meds and toiletries. Good luck and keep asking questions!

People here are very happy to help.

Annette


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



Celiac.com Sponsor (A8-M):



Guest lostweekend
One of the super fun things about Celiac, is that your absorption of necessary vitamins and minerals is nil. Thus, the symptoms of Celiac can be just about anything caused by malnutrition.

I had aching thighs and low back, and I think it turned out to be serious Vitamin B12 deficiency. If you haven't been checked for that, you should be.

I have been told I have IBS since I was in my teens (I'm 37) -- making it about 33 years or so I think I've probably had Celiac. Personally, and I know not all folks agree with me on this, I think IBS is a stand in for "I don't know what's wrong with you, and either me or your insurance company are unwilling to do the appropriate testing to find out what is irritating your bowels". You know your system is irritated for crying out loud...you want to know why.

So a month ago I asked for a Celiac panel myself. One of them came back positive (35 when 20-30 is mostly positive, and anything above is definite) and the other three bits of the test came back negative. I went on gluten free right away, and certain things got better instantly. I stopped itching. I started sleeping through the night (never even noticed that I hadn't been). My canker sores went away. Other things got worse - I became constipated for the first time in years (I have always been on the constipation [C] end of Celiac, but after quitting wheat [not gluten] two years ago, that had gotten better), and I felt emotionally drained. BUT...after I started getting the B12 shots and taking vitamins sublingually (under the tongue), i started to feel better. And after adjusting my diet to include more fiber and some probiotics, the C went away too. I feel as though I'm on the mend.

The mental fog and emotional rawness come and go. But the ANXIETY, for me, is gone. That disappeared when I quit wheat.

Anyway, I've rambed, but felt like what you've said really rung a bell with me. One thing I didn't expect with stopping the gluten - I hardly ever think about my stomach anymore. I realized that for years, my stomach has ALWAYS been on my mind.

Anyway, I'm glad you're here and I hope you decide to try the gluten-free diet no matter what your diagnosis. As far as I can tell, the grains that folks think of of as "alternatives" or for hippies or whatever, are better for you anyway...and taste good too.

Thank you, I am glad to be here. :)

My mental health this year has been so offbalance. I do not feel like myself anymore. I started really digging deep why all this was happening to me. I've always had anxiety with the IBS mainly because of the IBS! That mental fog people talk about needs to lift soon. I got to points and this is sooo wacky where I thought my husband was playing tricks on me. I'd turn off a light, open the dryer or start the washer and go back and forget all I did. Skip ahead 10 mins later and I see everything on and washing and freak out. This happened several times where I thought either someone was playing tricks on me or a ghost liked my laundry.

I went off gluten for a week and I said to my husband that I feel like I had no emotion and I think it was rather I had no anxiety. I always thought about my stomach too- every day for the past 15 years. It controls my life. Where I can go, what times I eat and who I eat with, etc. It's horrible. Irritable Bowel means something is irritating your bowels and obviously we mostly put food into our stomachs so there is really the answer. Canker sores, I've had those since I was as young as a can remember. I was always in the nurses office getting this stuff called Orabase-B stuck on huge canker sores. I get them very easily even to this day and they last for 1-2 weeks with me.

I also don't see how you can be weakly positive for something but apparently you can get false-positives. I don't know my results yet and I have to admit I am pretty nervous. I just want to hear an answer for all this. I started eating gluten-free again and I will see what happens. I did feel better but I'm hoping I wasn't just too much hope thinking this was my problem. One big real change I saw was constipation for me which is a huge difference. That within itself speaks volumes. :D

Oh, yes celiac can cause major brain problems. For me, when I've had gluten, I get major "fog", depression, irritiablity - My husband's breathing will make me want to jump out of my skin. My dr is of the opinion that the current common tests for celiac probably aren't sensitive enough to be completely reliable. There may be more things that could be tested but the medical community doesn't know about them yet. And believe it or not, there is a growing faction in the medical field that thinks that the diet challenge is the most accurate test. You feel lousy, lots of stomach and intenstinal problems along with aches and pains. You go gluten free for three weeks or so. If you reintroduce gluten and the same old problems reappear, you got celiac! You alone know your body the best. If you felt better while gluten-free, then you've got problems with gluten. Watch out for all the other places gluten can hide like in meds and toiletries. Good luck and keep asking questions!

People here are very happy to help.

Annette

Watch out for all the other places gluten can hide like in meds and toiletries--

This is the one area I am lost on- what about makeup? Is there a list?

I had to laugh about the breathing thing you spoke of. Sadly I feel like that with my kids. I feel like my emotions are out of control all the time and wonder how people manage stress so well. I feel emotional about everything. I cry at the drop of a hat and feel basically like my hormones are turned on high. The Xanax is the only thing helping me calm down and I'm on such a low dose and soon I won't be able to get that.

I'm hoping either way this diet helps me, it's worth a try even not knowing the results from how much agony I've been in....

ravenwoodglass Mentor
Thank you, I am glad to be here. :)

I also don't see how you can be weakly positive for something but apparently you can get false-positives.

I wanted to correct this. There are no such things as a false positive, there are however false negatives. With gluten if the test is even weakly positive you need to be gluten free.

Guest lostweekend
I wanted to correct this. There are no such things as a false positive, there are however false negatives. With gluten if the test is even weakly positive you need to be gluten free.

The main thing I am running into with doctors is that you can have false-positives and not have celiac. I just don't understand how you can test positive at all for something that's really not there.

ravenwoodglass Mentor
The main thing I am running into with doctors is that you can have false-positives and not have celiac. I just don't understand how you can test positive at all for something that's really not there.

I don't understand them saying that either. Perhaps someone will know but from everything I have read and experienced there are no false positives. There are some idiot doctors that will test after you have been gluten-free and then say 'See thats negative you never had it in the first place'. Regardless of what the doctors say if you feel better off gluten that is what you need to do.

Jennas-auntie Apprentice
I don't understand them saying that either. Perhaps someone will know but from everything I have read and experienced there are no false positives. There are some idiot doctors that will test after you have been gluten-free and then say 'See thats negative you never had it in the first place'. Regardless of what the doctors say if you feel better off gluten that is what you need to do.

The only thing I have run into in the literature is that I've read in certain cases the tTG can be elevated from more than just celiac, basically it can be elevated in giardia and in certain protein intolerances (like some people have with chicken or tuna) and some incredibly rare genetic disorders. However, if your EMA is positive, that is highly celiac specific-you won't get a "false" positive on that. If your EMA is positive, by golly you've got celiac. Plus, if you have an elevated tTG, even if you DO have a protein intolerance it doesn't rule out celiac. I've tried to read up a bit on this because they were giving that line to my niece's parents also for a while, but when they did the biopsy finally that was definitely positive for celiac. The only one I've read on that can be "vague" like that is tTG, but even then, remember, even if you have giardia or a protein intolerance that doesn't mean you can't also have celiac.

Wandering Hermit Contributor

The specificities of these assays are not 100%. That means false positives are always a statistical possibility. No test, of anything, is perfect.

I've also read that AGA IgG can be high for conditions other than celiac disease. I read that in a journal article I found while browsing.

This Open Original Shared Link says IgG AGA found positive in 10% of "normals." Also says may not be reliable.

From an article by Joseph Murray:

The sensitivity and specificity of AGA tests are known to vary. Our study confirms the results of previous studies that indicated that the specificity of AGA-IgA and AGA-IgG tests does not approach that of the EMA test. ... A positive AGA-IgA test does not replace the need for a more accurate test to make the diagnosis of celiac disease.

Open Original Shared Link

Or this:

If all of the tests are positive then they are pretty accurate, GT 95% right. However, there are several reasons and circumstances when they are not so accurate. IgA and IgG are two different varieties of antibodies we have in our immune systems. The IgA gliadin and IgA endomysial tests are the most accurate and also become negative relatively quickly after stopping gluten (3-6 months). The IgG is not as specific (it can be positive in non celiacs). However it is important to do both, as about 4% of celiacs have low enough levels of IgA to make the IgA tests inaccurate.
from Open Original Shared Link

Also in thjat link Dr. Kumar states: "If the tests are performed using well standardized tests with known positive and negative predictive values then you can make the statement that if the serological tests are negative celiac disease can virtually be ruled out. The problem is that some of these assays, especially the gliadin, can give you false positive results." and "In patients with selective IgA deficiency only the IgG antigliadin antibody may be present, however, this antibody is less specific. It means that the IgG-type antigliadin antibody may be present in otherwise normal individuals."

This notion that one positive test means 100% certainty of celiac disease is simply not true.

Guest lostweekend

Got my results and she said I was normal but if I felt the diet was helping to continue. Really annoys me since I was off gluten for over a week and got tested. I don't doubt the results it's just frustrating. :huh:

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,192
    • Most Online (within 30 mins)
      7,748

    MariaV
    Newest Member
    MariaV
    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

    • Ginger38
      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
      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
      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? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...