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

Not High Results?

Peta

Recommended Posts

Peta Explorer
Peta
Posted

Hi, I am so sorry to pester people with silly questions (my last post was not answered so I feel like I am being a nuisance)

My 10 year old son is booked in to a consult in a large hospital before his biopsy. The appointment is in Feb 2007, and then they will make another appointment for the procedure (could be another month or so after that).

I have been told by them that if he has high results for celiac then he could get in before Christmas.

His antibodies came back neg, but his gene test was

HLA DQ2 Alleles

DQA1 *05 positive

DQB1 *02 positive

HLA DQ8 Alleles

DQA1 *0301 positive

DQB1 *0302 positive

plus his White Cell Count and Lymphocytes were both under normal range

Is it worth trying to get the biopsy earlier or will they consider this non urgent (not high results)??

He is not well and went off to school, yet again, with awful stomach pains.

I know that I do not need the biopsy to go 'gluten-free' but his condition will not be taken seriously by anyone in the family without proven results (as my sister and nephew are 'diagnosed' celiacs) and I will not gain the support.

Thanks for any opinions on these test results.

Peta

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

Celiac.com Sponsor (A8-M):


Nic Collaborator
Nic
Posted
Hi, I am so sorry to pester people with silly questions (my last post was not answered so I feel like I am being a nuisance)

My 10 year old son is booked in to a consult in a large hospital before his biopsy. The appointment is in Feb 2007, and then they will make another appointment for the procedure (could be another month or so after that).

I have been told by them that if he has high results for celiac then he could get in before Christmas.

His antibodies came back neg, but his gene test was

HLA DQ2 Alleles

DQA1 *05 positive

DQB1 *02 positive

HLA DQ8 Alleles

DQA1 *0301 positive

DQB1 *0302 positive

plus his White Cell Count and Lymphocytes were both under normal range

Is it worth trying to get the biopsy earlier or will they consider this non urgent (not high results)??

He is not well and went off to school, yet again, with awful stomach pains.

I know that I do not need the biopsy to go 'gluten-free' but his condition will not be taken seriously by anyone in the family without proven results (as my sister and nephew are 'diagnosed' celiacs) and I will not gain the support.

Thanks for any opinions on these test results.

Peta

I might be very wrong but I believe when they are saying "high" for celiac they are referring to the antibodies. It is the antibodies that show he is actively sick, the genes show he has the potential to be sick. I may be wrong though. Sorry if I'm no help.

Nicole

jauquilt Newbie
jauquilt
Posted

Hello, I am also new to this site. I am trying to wait until I see a holistic specialist in March. As you may be able to tell, I am having difficulty waiting.. <_<

Has anyone ever noticed with celiac's that you eat when not hungry and then have a bout with diarrhea? It's like my body craves food to empty my bowels.

I have read most of the posts for the last month, today, and noticed that some of you have a weight loss problem. I am the opposite and seem to feel that I am probably malnourished and that could be the reason why I am not losing weight, and actually gaining. I went to a health food store and picked up some multi vitamins that wouldn't give me headaches, but now I seem to be having "back spasms" again like I did when I was diagnosed with fibromyalgia.

anyone think these are all connected?

I have migraines... barometric pressure, smells from perfumes, not eating, lights, any way you can get them, I seem to have them :angry:

Diarrhea at least once or twice a day

Can't go to sleep at night and hit the wall at 3 or 4 in the afternoon dead tired

Thanks for any insight you can give me. I have had a ton of tests with negative answers. Basically looking for the answer I know...call the dr again and see if you can get in earlier :)

super-sally888 Contributor
super-sally888
Posted

Hi and Welcome. Please don't feel your questions are silly. They're not and you need to know.. but sometimes people may miss your post or not know an answer and don't answer. Keep posting. :)

Yes, I have found that eating (or particularly for me) drinking coffee stimulates a D episode about 30 minutes later. I think it is cause eating / drinkingr stimulates peristalsis. For me, if I am constipated (happens from time to time) drinking a lot of water will actually help cause peeing and BM happen together.. hope this doesn't gross anyone out.

Regarding weight loss. If your body is starving or nutrient deficient, it may hang onto your weight harder than ever and even gain instead of lose. That is what I have found anyway. I am only one week in and I tripped up yesterday.. but last week I dropped 4 lbs... and I was eating. Just not eating gluten... But the last 2 days (still having side effects) no change in weight....

The human body sure is interesting. Just wish mine wasn't quite so interesting!

Sally

Raenan Newbie
Raenan
Posted
I have migraines... barometric pressure, smells from perfumes, not eating, lights, any way you can get them, I seem to have them :angry:

You know.. those are all things I have noticed over the years and associate with my Fibro.

As to the hitting the wall at the time of day you said .. that is when I finally feel like I have woken up.. it only lasts for a little while but at least I seem to have some energy for an hour or so.

I have no clue if I have Celiacs or not.. according to the bloodtests the second doc said I don't but as I told him.. the first doc who ordered them said he still thought I have celiac disease and that is why I am being sent for the biopsy.

I would just like an answer is all. It would be ever so nice to know for sure why I have felt like crap for the past 20 or so years... and be able to tell people there actually are tests that show that I am not a faker.

par18 Apprentice
par18
Posted
Hi, I am so sorry to pester people with silly questions (my last post was not answered so I feel like I am being a nuisance)

My 10 year old son is booked in to a consult in a large hospital before his biopsy. The appointment is in Feb 2007, and then they will make another appointment for the procedure (could be another month or so after that).

I have been told by them that if he has high results for celiac then he could get in before Christmas.

His antibodies came back neg, but his gene test was

HLA DQ2 Alleles

DQA1 *05 positive

DQB1 *02 positive

HLA DQ8 Alleles

DQA1 *0301 positive

DQB1 *0302 positive

plus his White Cell Count and Lymphocytes were both under normal range

Is it worth trying to get the biopsy earlier or will they consider this non urgent (not high results)??

He is not well and went off to school, yet again, with awful stomach pains.

I know that I do not need the biopsy to go 'gluten-free' but his condition will not be taken seriously by anyone in the family without proven results (as my sister and nephew are 'diagnosed' celiacs) and I will not gain the support.

Thanks for any opinions on these test results.

Peta

Peta,

Are your sister and nephew on the gluten free diet? When you say no one in your family will take it seriously who are you talking about (husband, parents?) Why in the world with a sister and nephew both diagnosed would you not put your son on the diet right now to see if you can give him some relief? You have already admitted that you do not need a biopsy to go "gluten free". If the diet does not work you can always go back to gluten and test. Sometimes when I see a post like this I am left to wonder if there is not a power struggle between the adults in which to sole purpose is to say "I told you so". Meanwhile the person in the middle ( the child ) is left to suffer until all parties have ceased their bickering as to what is wrong. If you could get a test next week it might be one thing but if you have to wait almost 3 more months then all of you need to put your differences aside and try to help your son now.

Tom

GFBetsy Rookie
GFBetsy
Posted

Peta -

Sorry you didn't get an answer to your first post . . . sometimes things slip through the cracks. Good luck with everything.

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

Celiac.com Sponsor (A8-M):


Peta Explorer
Peta
Posted
  • Author
Peta,

Are your sister and nephew on the gluten free diet? When you say no one in your family will take it seriously who are you talking about (husband, parents?) Why in the world with a sister and nephew both diagnosed would you not put your son on the diet right now to see if you can give him some relief? You have already admitted that you do not need a biopsy to go "gluten free". If the diet does not work you can always go back to gluten and test. Sometimes when I see a post like this I am left to wonder if there is not a power struggle between the adults in which to sole purpose is to say "I told you so". Meanwhile the person in the middle ( the child ) is left to suffer until all parties have ceased their bickering as to what is wrong. If you could get a test next week it might be one thing but if you have to wait almost 3 more months then all of you need to put your differences aside and try to help your son now.

Tom

Tom,

I am sorry if it seems as though I am putting my son through pain to win a 'power struggle' but I can assure you this is not the case.

I am not a doctor and therefore do not wish to presume that I know it is celiac. The fact that his antibodies came back negative puts this in doubt. I don't wish to change his dietary habits because I wish to get the most accurate results possible on his biopsy. If I drastically change his eating habits then it may make it difficult for them to diagnose his problem.

I know, in my sister and nephew's case, that there are certain medical cards, vouchers and support through the Celiac (Coeliac, as it is spelt here) Society but you must be 'officially' diagnosed to receive these.

If I recieve no answers after his biopsy then I will trial the gluten-free anyway.

Thankyou for your reply. I do understand the point you were making.

Peta

par18 Apprentice
par18
Posted
Tom,

I am sorry if it seems as though I am putting my son through pain to win a 'power struggle' but I can assure you this is not the case.

I am not a doctor and therefore do not wish to presume that I know it is celiac. The fact that his antibodies came back negative puts this in doubt. I don't wish to change his dietary habits because I wish to get the most accurate results possible on his biopsy. If I drastically change his eating habits then it may make it difficult for them to diagnose his problem.

I know, in my sister and nephew's case, that there are certain medical cards, vouchers and support through the Celiac (Coeliac, as it is spelt here) Society but you must be 'officially' diagnosed to receive these.

If I recieve no answers after his biopsy then I will trial the gluten-free anyway.

Thankyou for your reply. I do understand the point you were making.

Peta

Peta,

I understand and good luck on your diagnosis.

Tom

mamabear Explorer
mamabear
Posted

Peta,

It is entirely possible to have negative blood tests for antibodies, and still have celiac disease. There are several triggers including viral illness and stress which spur the autoimmune reaction to gluten. Timing of the blood tests is very important. You can have a less active flare of the reaction, whether it is GI, or rash, or mouth ulcers,etc... and not catch the antibody rise. You might also retest after a flare has occurred, but wait about 3-4 weeks to do so. You have to watch the insurance companies , as they may deny much retesting. It is also possible to have positive antibody tests and a negative biopsy and still have sprue. Celiac sprue has got to be one of the hardest conditions to diagnose! Good luck to you and yours.

Peta Explorer
Peta
Posted
  • Author

Thankyou for your reply.

I have so many questions and obviously want to do what's best for my son.

I appreciate people taking the time to reply and educate me some more.

I live in Australia. I don't even know about the 'insurance' thing...perhaps our health system is different?

Everyone qualifies for medicare and it covers all costs for hospital stays etc. There is no need to 'qualify'?

However if it is 'selective surgery' you need to have private health insurance in order to speed up the process, or in some cases, to have it done at all. Thankfully all celiac testing and biopsies aren't in this category.

THANKS AGAIN EVERYONE FOR YOUR REPLIES

Peta

Ursa Major Collaborator
Ursa Major
Posted

Peta, since your son obviously has the celiac disease genes, and he has the symptoms, plus relatives with celiac disease, in my mind there is not doubt he has it. The blood tests are very unreliable, and catch only about 50% of celiac disease cases. And you can have celiac disease, even if the biopsy is negative. A positive biopsy will definitely diagnose celiac disease, but a negative one can never rule it out.

The diet is really the best and most reliable test for celiac disease. If your son's symptoms would dramatically improve on the diet, and with his genes, that would really be all the evidence needed.

Knowing that your son's biopsy is not for another four months, and knowing that he is suffering in the meantime really upsets me. I hate seeing children suffer needlessly.

All the best, you have to make the choices for your son.

Archived

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

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


  • Member Statistics

    • Total Members
      127,836
    • Most Online (within 30 mins)
      7,748
    RyanOB
    Newest Member
    RyanOB
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.4k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • knitty kitty
      Hidden Gluten in distilled vinegar

      By knitty kitty · Posted

      @Manaan2,  I'm so happy to hear you're going to try thiamine and magnesium!  Do let us know the results!   You may want to add a B 50 Complex with two meals of the day to help boost absorption.  Thiamine interacts with each of the other B vitamins which are all water soluble.   When supplementing magnesium, make sure to get sufficient calcium.  Calcium and magnesium need to be kept in balance.  If you choose a calcium supplement, take two hours apart from magnesium as they compete for absorption.  Take Calcium with Vitamin D.  Vitamin D helps calm the immune system.   For pain, I use a combination of thiamine, B12 Cobalamine, and Pyridoxine B6.  These three vitamins together have analgesic effects.  My preferred brand is "GSG 12X Takeda ALINAMIN EX Plus Vitamin B1 B6 B12 Health Supplementary from Japan 120 Tablets".  Alinamin is another form of thiamine.  It really is excellent at relieving my back pain from crushed vertebrae without side effects and no grogginess.   Look into the low histamine version of the Autoimmune Protocol Duet (Dr. Sarah Ballentyne, a Celiac herself, developed it.)  It really helps heal the intestines, too.  It's like a vacation for the digestive system.  Add foods back gradually over several weeks after feeling better.   I'm so happy to have pointed the way on your journey!  Let us know how the journey progresses! P. S. Add a Potassium supplement, too.  Potassium is another electrolyte, like magnessium, that we need.
    • Manaan2
      Hidden Gluten in distilled vinegar

      By Manaan2 · Posted

      @knitty kitty I can't thank you enough!  My husband and I already started looking into those supplements.  We definitely plan to give it a try.  We've been against the Miralax since it was originally advised by PCP, but because of the level of pain she experienced on a daily basis, we decided to try it.  We've made many attempts to gradually decrease but due to her pain and related symptoms, we've kept her on it while trying all sorts of other dietary adjustments pre and post diagnosis specific to food; so far none of those efforts have made a significant difference.  I will definitely share how she's doing along the way!
    • BIg Nodge
      Opinions on my test results/symptoms

      By BIg Nodge · Posted

      Hi, I have recently embarked on the gluten-free journey. I have what to me seems like a somewhat confusing set of test results and symptoms. I have been impressed by the accumulated knowledge and thoughtfulness as I browse this forum, so I figured I'd make a post to see if anyone can offer any insight. I know there are many posts like this from new users, so I have tried to do my baseline research first and not ask super obvious questions.  I'm 43, overall very healthy. No history of gluten sensitivity or really any of the classic GI symptoms. About three years ago I started to experience intermittent bouts of fatigue, chills/cold intolerance, and shortness of breath/air hunger (sometimes feels like a hollowness in my chest, hard to describe). The symptoms over time have become fairly significant, though not debilitating, I am able to exercise regularly and am fairly physically active, continue to perform well at work. But for example I have gone from someone who consistently ran hot, was always cranking the a/c, to someone who wears a down vest inside at work in winter and get chills if the a/c even blows on me in summer. I get tired and lose energy even when getting decent amounts of sleep, and have to have my wife take over on long drives that I could previously handle with no problems. More generally when I am experiencing these symptoms they seem to crowd out space in my mind for focusing on my family, my hobbies/activities etc, I sort of withdraw into myself.   I happened to be experiencing these symptoms during an annual physical with my PCP a few years ago, he observed post nasal drip and suggested it was allergies and that I treat it with claritin. At first it seemed to respond to claritin (though not zyrtex), but over time I became unsatisfied with that answer. There didn't seem to be any seasonal rhyme or reason to my symptoms, and I felt like I was on an endless loop of taking claritin, then stopping, not being sure if it was even making a difference. I did eventually get allergy tests and found modest allergies to dust and pollen, which didn't feel like a smoking gun.  I then started seeing a natural medicine doctor who was much more willing to explore my symptoms via testing. The first thing that came back abnormal was elevated thyroid peroxidase antibodies/TPOs, 137 IU/mL vs a reference range of <9. At the same time my thyroid panel showed normal thyroid hormone levels. So it appears my immune system is attacking my thyroid even though it is working fine. I got a thyroid ultrasound at the time, it was clear, but with some abnormalities such that they suggested I get is scanned again in a year. These are certainly risk factors for a thyroid autoimmune disease, though my thyroid seems to be working fine for now.  From here my doctor considered celiac due to the murky thyroid/celiac links, so we did a panel. Results were as follows: TT IGA <1 U/ml, TT IGG <1 U/ml, deamidated gliadin IGA 24.6 U/ml, deamidated gliadin IGG <1 U/ml, IGAs 170 mg/dL. Readings greater than 15 considered high by my lab for the first four, my IGAs are within reference range. So basically just the deamidated IGA popped, but my IGAs are normal. I also notice on the tests that my thyroglobulin was high, 86.7 ng/ml vs a range of 2.8 - 40.9.  My doctor suggested that it certainly wasn't conclusive for celiac, but it was possible, and likely that I have some sort of gluten sensitivity. She suggested going gluten free and seeing how I felt as opposed to doing a biopsy. The best theory I can come up with is perhaps I am a silent celiac or just have a gluten sensitivity that doesn't produce immediate GI symptoms, but is still doing damage and over time has caused leaky gut. So now gluten is getting into my blood, and my immune system is attacking it but also mistakingly attacking my thyroid.  So that's what I did, went gluten free in October. It's been about four months, and I am really not feeling any difference. I still get the same symptoms that come and go. My bowel movements may be a bit more regular, but it was never a major issue before so I would consider that a minor improvement. I know that it can take a while to see improvements, and I am going to remain gluten-free and see how I feel. But I am definitely questioning whether I really understand what is going on, and am open to any thoughts or suggestions from the forum. Sometimes I wish I just went ahead with the biopsy before going gluten-free. While I would certainly be down to start drinking IPAs again ahead of a biopsy, you know, for science, I feel like at this point I would be throwing away four months of work and am better off staying the course and seeing what happens. But I'm really not sure.  I know there is a lot of thyroid knowledge on these boards, along with the celiac expertise, so I'm curious if this resonates with anyone's experience. And I'm interested in what sort of timelines people have experienced in terms of feeling improvements for some of these non-GI symptoms like chills, SOB, brain fog etc. Thanks in advance. 
    • cameo674
      Testing positive for antibodies, are there visible changes to the colon that could be seen without a biopsy?

      By cameo674 · Posted

      Does it taste like black licorice?  It said it was chewable.  I do not like that flavor.     Since the burn at the back of my throat is there everyday, I usually only take something when it is unbearable and keeping me from ADL especially sleep.  
    • Scott Adams
      Nandos improper preparion celiac childrens food

      By Scott Adams · Posted

      Your concerns about Nando's cross-contamination practices are valid and important for the celiac community. It's disappointing that Nando's does not have stricter protocols for children's portions, especially given the risk of cross-contact with gluten-containing items like garlic bread. Cooking gluten-free items on shared surfaces, even if cleaned, is not safe for individuals with celiac disease, as even trace amounts of gluten can cause harm. While the adult butterfly chicken may be a safer option, the inconsistency in practices for children's meals is concerning. It's frustrating that Nando's headquarters did not take responsibility, but sharing your experience raises awareness and may encourage them to improve their protocols. Consider reaching out to celiac advocacy organizations to amplify your concerns and push for better standards. Always double-check with staff and emphasize the importance of avoiding cross-contamination when dining out.
×
×
  • Create New...