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

Neg Blood Tests, Now What?


balmerhon

Recommended Posts

balmerhon Rookie

I posted about a week ago about my son who was tested for Celiac disease due to poor weight gain and persistent diarrhea.

Aside from that, he is fine. He eats (though not loads), he's happy, he's energetic, he sleeps well. He has no gas, bloating, tummy pain or any other symptom of allergy or intolerance.

I have IBS and we do have autoimmune problems in the family. I have also tested negative for Celiac.

His doctor is worried about his BMI - he's below the 5th percentile.

So now that we have negative blood tests, what do we do? My son is going to the University of Maryland which is well-known for it's Celiac care, so I know the right tests are being done. But all the tests aren't in yet and we don't have an appt with the doc until early July for follow up. I spoke to the nurse today and she's the one who told me the results are negative so far.

My son has to be potty trained by September in order to attend preschool but with persistent diarrhea, I haven't even tried this yet.

Any thoughts on what the next step might be? It's driving me crazy that I won't see the doc until July.


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

I haven't followed you story but as long as he's gotten the Celiac panel blood test and biopsy of the small intestine while he's been on gluten, then he's had all the tests that he needs to be on gluten for. The other tesing options are allergy(skin and/or blood) which look for a different kind of reaction but have been helpful for some of us as wheat has turned up there and the other would be stool testing through Enterolab, which you don't have to be on gluten to do. So you could just go ahead and put him on a gluten-free diet. If he's had those two tests that I first mentioned, then the results of any others are not going to be affected by him going gluten-free.

balmerhon Rookie

He has not had a biopsy. Would they still do that even if the blood tests are negative? I know that blood tests are not always accurate, but I'm reluctant to have him go through a biopsy when his symptoms aren't that severe. To be honest, they are more troublesome to me then they are to him at this stage though I certainly appreciate that if he has undiagnosed Celiac, that's not good for long-term health.

missy'smom Collaborator

It may depend on the doctor how they would proceed after a neg. blood test. We did not have the opportunity to do the biopsy, although I would not hesitate to do it. I was undiagnosed for 8 years and so sick I couldn't wait to find a doc. who would do one. A doc. who was not my own pointed me in the right direction, unofficially, and I moved just after that so just tried gluten-free and it was so clear that that was my problem. My son did not display severe symptoms and had a neg, blood test so I knew I would never be able to get an official Dx at this point in his life. You can see my signature to see how we came to decide to take him gluten-free. I often recommend official testing if possible because it is worth it to some for various reasons, to have an official Dx. It's a lifelong commitment and some need that Dx to stick with it and not second guess themselves all the time. Perhaps others with small children can better advise about biopsies in small children and share how they made their decisions. Good luck with your decisions and wish the best of health for your kiddo.

mamaesq Rookie

Hey Hon! Love the name!

I took my 4 year old to see Dr. Fasano at University of Maryland earlier this year and his bloodwork was fine, so he didn't do anything else. I was diagnosed with celiac in October and my son is itty bitty, so I worry. He has constipation, always complains about tummyaches, gets canker sores, can be irritable, etc.

My son went back to the pediatrician today for a weight check and he's only gained 3 lbs in almost two years. The pediatrician wanted him to weigh 35 lbs today and he's only 33. He said that since his bloodwork was negative, he doesn't think we should scope him, which I agree with at this point, and so he agreed to let me try a gluten free diet with him for a few months. So, tomorrow we start. I think I am going to go down to the Whole Foods in Mt. Washington this weekend since they have a great selection of kid friendly gluten free foods.

Putting myself on a gluten free diet was easy (relatively speaking), this is going to be a challenge!!

Good luck!

balmerhon Rookie
Hey Hon! Love the name!

I took my 4 year old to see Dr. Fasano at University of Maryland earlier this year and his bloodwork was fine, so he didn't do anything else. I was diagnosed with celiac in October and my son is itty bitty, so I worry. He has constipation, always complains about tummyaches, gets canker sores, can be irritable, etc.

My son went back to the pediatrician today for a weight check and he's only gained 3 lbs in almost two years. The pediatrician wanted him to weigh 35 lbs today and he's only 33. He said that since his bloodwork was negative, he doesn't think we should scope him, which I agree with at this point, and so he agreed to let me try a gluten free diet with him for a few months. So, tomorrow we start. I think I am going to go down to the Whole Foods in Mt. Washington this weekend since they have a great selection of kid friendly gluten free foods.

Putting myself on a gluten free diet was easy (relatively speaking), this is going to be a challenge!!

Good luck!

Thanks so much for your input. It's interesting to know that Dr Fasano didn't pursue it further.

We've decided to try gluten-free for a couple of weeks to see what happens. Unfortunately, I'm already in sticker shock. We went to Whole Foods in Annapolis and I spent $40 for not a lot. On top of that he's not loving the food so far.

I don't know. I'm not sure what's going to happen now. What I do know is the diarrhea is getting old for everyone and if he's not potty trained by Sept, he can't go to preschool. :(

raquelita-83 Newbie

I'm in the same situation as well. My son (5) just had the blood tests and last week they came back negative. I'm requesting a copy of the test results so I can look at them myself as well. His symptoms are not what I would call "extreme" (constipation, poor weight gain, tummy aches, less than 5th percentile for both height & weight) but they are worrisome to me.

I just found out this weekend that my grandmother is a diagnosed (through blood test & biopsy) celiac. Apparently she was diagnosed a few years ago, but all I remember was that she was sick and had to go on a special diet. Now that I realize that she has Celiac, I am almost certain that is what my son has as well. I really would like a positive DX for my son as he is so young, and I don't want to subject him to a lifetime of a this strict diet if it is not needed.

Should I have him (and myself, because I'm curious) tested to see if he has the gene(s) for Celiac? If he does, I guess I will just assume that he has it. I would really like to have the positive DX as I feel this will help in dealing with his school in the future, and also in convincing his father (we are divorced) that he needs to follow a special diet when he stays with him (currently, he thinks I am crazy about this Celiac thing). I also have an appt with a GI dr in a few weeks, wondering if they will order the biopsy since he has negative blood testing??


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



Celiac.com Sponsor (A8-M):



OptimisticMom42 Apprentice
I don't want to subject him to a lifetime of a this strict diet if it is not needed.

hello raquelita_83,

I don't have any advice about the testing but being divorced I can understand your needing a dr to tell your ex and ex-in-laws not to posion your child.

But what I really wanted to say is that the diet doesn't feel as restrictive as it did at first. I've been gluten/dairy/soy free for several months now and it seems that each week I find some other fun thing I can eat. This week we've been stirring marshmellows into our squash! yum We bought a box of fruity pebbles and a box of cocoa pebbles. I ate gummy worms! The sloppy joes sucked. The taco seasoning and avacado/tomato dip (not sour cream) was awesome.

My #2son anounced to everyone that he really likes olive oil! and #1son said he has learned so much since the brain fog went away and he can think. My ex-MIL is having classes on nutrition (blood type diet, eye reading) at her house for the extended family. My DD found them boring cause she already knew that stuff. She was proud of herself for being ahead of the adults but was respectful and just went off to play outside with her little cousins.

Please don't think of this diet as a chore. It has at times been challeging but so worth the rewards.

mamaesq Rookie

I forgot about the Whole Foods in Annapolis...I hear it is is absolutely amazing. It is shocking to see the grocery bills go up so much!

We are a couple of days into the diet and he's doing pretty well. He suddenly hates fruit, and now I feel like his diet is even more limited. :rolleyes: I think he might be feeling pretty good- he's been in a really great giggly mood, which hasn't happened for a long time.

LDJofDenver Apprentice

One thing you can do is genetic testing. I'm always hearing that blood work on children often has a lot of false negatives (and all the while damage is being done).

Genetic testing will at least show you if you can completely rule it out (or not).

You can do these in-home.

Here's a link to celiac.com article "Ten Facts About Celiac Disease Genetic Testing"

https://www.celiac.com/articles/21567/1/Ten...ting/Page1.html

It also has links in the article to a couple sources from which to order the tests.

dadoffiveboys Rookie

My son tested negative to all the testing AND had the endoscopy and was still negative. He had all the same symptoms you described - below the 1th percentile in weight, diagnosed failure to thrive. He never had pain/diarrhea because he just stopped eating when he started to feel sick. Anyhow, he's now been gluten-free for 1-2 years. He gained 15 lbs since then, 6 inches in height, went from the <1th% in weight to the 20% BMI (at least he's now within the lower normal range).

The doctor won't diagnose Celiac unless they have a positive test and/or endoscopy. I was told instead he must be "allergic to gluten" and for him not to eat it. The doctor couldn't deny the positive results of the gluten-free diet. They took approximately 1 month to show the signs but it showed as a big spike in his growth chart.

As a followup I did the genetic testing and I am a DQ4/DQ8 (celiac gene) and my son is DQ5/DQ8 (sensitive/celiac genes). Not sure it told me anything new but you CAN have negative testing and still have gluten intolerance/allergy. The most "proof positive" for a protein allergy is a food elimination diet. No test is guaranteed to be 100% accurate otherwise to diagnose a protein intolerance/allergy.

balmerhon Rookie
My son tested negative to all the testing AND had the endoscopy and was still negative. He had all the same symptoms you described - below the 1th percentile in weight, diagnosed failure to thrive. He never had pain/diarrhea because he just stopped eating when he started to feel sick. Anyhow, he's now been gluten-free for 1-2 years. He gained 15 lbs since then, 6 inches in height, went from the <1th% in weight to the 20% BMI (at least he's now within the lower normal range).

The doctor won't diagnose Celiac unless they have a positive test and/or endoscopy. I was told instead he must be "allergic to gluten" and for him not to eat it. The doctor couldn't deny the positive results of the gluten-free diet. They took approximately 1 month to show the signs but it showed as a big spike in his growth chart.

As a followup I did the genetic testing and I am a DQ4/DQ8 (celiac gene) and my son is DQ5/DQ8 (sensitive/celiac genes). Not sure it told me anything new but you CAN have negative testing and still have gluten intolerance/allergy. The most "proof positive" for a protein allergy is a food elimination diet. No test is guaranteed to be 100% accurate otherwise to diagnose a protein intolerance/allergy.

Thanks for that info. I'm going to take notes from this thread for when we finally do see the doctor.

Meanwhile, we are on day 6 of a gluten free diet, he's eating well, but if anything, the poop is worse. Is this normal?! Maybe I'll start a separate thread for this as it is worrying me.

Amyleigh0007 Enthusiast

Meanwhile, we are on day 6 of a gluten free diet, he's eating well, but if anything, the poop is worse. Is this normal?! Maybe I'll start a separate thread for this as it is worrying me.

Maiko Newbie

I have 2 children that have been diagnosed after gene testing and endo/biopsy. My oldest is waiting for her gene test results.

DH and I have had blood tests but they both came back negative. DH has his enod/biopsy scheduled for July, they won't do anything with me because I'm exepecting baby #4.

I've put the boys on a gluten-free menu but everyone else is eating gluten. I'm somewhat anxious to hear what DH's results will be, I'm curious! Both sets of parent have mild health issues, I'd like to help them if this is the way.

I hope the change in foods will help with trips to the bathroom. My 20 month old is learning what "normal" should be like. :(

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      127,832
    • Most Online (within 30 mins)
      7,748

    Cindessa
    Newest Member
    Cindessa
    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

    • BIg Nodge
      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
      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
      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.
    • Scott Adams
      I had this symptom when I was diagnosed. Are you sure that your diet is 100% gluten-free?  Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article has some detailed information on how to be 100% gluten-free, so it may be helpful (be sure to also read the comments section.):      
    • Scott Adams
      Based on your results, it seems unlikely that you have celiac disease. A negative endoscopy and the absence of HLA-DQ2/DQ8 genes (the primary genetic markers for celiac) strongly suggest you do not have the condition. However, the elevated TTG-IgA (22) could indicate a temporary immune response or another issue, such as a different autoimmune disorder, intestinal infection, or even a lab anomaly. The presence of DQA1*05 alone is not diagnostic for celiac. Meeting with an allergist and GI specialist is a good next step to explore other potential causes for the high antibodies, such as non-celiac gluten sensitivity or other immune-related conditions. Keep a detailed food and symptom diary to help guide further testing and discussions with your doctors. Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.
×
×
  • Create New...