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

Didn't Do The Correct Tests?

bugsmom

Recommended Posts

bugsmom Rookie
bugsmom
Posted

I just called the Children's Hospital to schedule an appointment with a GI doctor there that has a "clinical interest" in Celiac disease. We have already seen a GI there a few months ago, but her interests were elsewhere and when she did mention celiac several months ago she only told us that we would have to do a biopsy -- no mention of a blood test first -- so we declined because we didn't really understand and she did a crappy job of explaining it (something I am still mad about and also a part of the reason I would like to change GI'). Anyway, when I tried to make this appointment, they called me back and said that I could not get into the "celiac clinic" without a diagnosis. What the hell??? This is the same hospital that we were in three months ago that ran the blood tests that were sent to our pediatrician, who then told us that the results were positive. Still, the hospital insists that they only have a test for IgA (under 3) and IgG (28). They said that although the IgG score is slightly elevated, it is not in and of itself an indicator of celiac. They said there was no Ttg run -- which is the one they wanted. They said that without it they could not diagnose celiac. I don't understand enough and cannot figure it out in any of the books exactly what these numbers mean -- it seems that there are a lot of potential tests and no explanation of any scores anywhere -- does anyone understand what these numbers mean?

I called the pediatrician and she confirmed what the hospital said -- they didn't run all the tests and that they told me when I called in July to find out the results she told me they were positive based on the IgG. She said that anything over 18 is considered positive.

So now here we are and they are telling me that in order to see a doc with a greater knowledge of celiac, I have to get a blood test to confirm -- well, we have been gluten-free for two months now -- what are the chances that the test is going to give us what we want? I don't even know who to be more angry with -- the hospital who can't get the tests right, or my pediatrician for not knowing what the tests really were. I swear, when you get a good doctor it is fantastic, but when they are bad . . . ugh. . . nothing will make you lose faith in the medical community like having sick child.

We did have enterolabs tests done, which I posted a few days ago, and they certainly confirm a gluten sensitivity at the least -- but it doesn't sound like the hospital is interested in those tests.

Our enterolab tests also said that he does not have the celiac gene -- but does have two gluten sensitivity genes. I still don't understand -- his malabsorbtion scores were through the roof. Is it possible to have severe malabsorbtion issues and not have the villi damage that constitutes celiac? And if so, what the heck does it even matter then? I mean, if he is still having sub-microscopic damage being done that is causing the anemia, bloated belly, lack of appetite, etc. . . . if he runs the same associated risks, and all the same complications, why does "celiac" get the diagnosis and treatment at a clinic with a specialist, but "gluten intolerant" affords us nothing?

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

Celiac.com Sponsor (A8-M):


azmom3 Contributor
azmom3
Posted
I just called the Children's Hospital to schedule an appointment with a GI doctor there that has a "clinical interest" in Celiac disease. We have already seen a GI there a few months ago, but her interests were elsewhere and when she did mention celiac several months ago she only told us that we would have to do a biopsy -- no mention of a blood test first -- so we declined because we didn't really understand and she did a crappy job of explaining it (something I am still mad about and also a part of the reason I would like to change GI'). Anyway, when I tried to make this appointment, they called me back and said that I could not get into the "celiac clinic" without a diagnosis. What the hell??? This is the same hospital that we were in three months ago that ran the blood tests that were sent to our pediatrician, who then told us that the results were positive. Still, the hospital insists that they only have a test for IgA (under 3) and IgG (28). They said that although the IgG score is slightly elevated, it is not in and of itself an indicator of celiac. They said there was no Ttg run -- which is the one they wanted. They said that without it they could not diagnose celiac. I don't understand enough and cannot figure it out in any of the books exactly what these numbers mean -- it seems that there are a lot of potential tests and no explanation of any scores anywhere -- does anyone understand what these numbers mean?

I called the pediatrician and she confirmed what the hospital said -- they didn't run all the tests and that they told me when I called in July to find out the results she told me they were positive based on the IgG. She said that anything over 18 is considered positive.

So now here we are and they are telling me that in order to see a doc with a greater knowledge of celiac, I have to get a blood test to confirm -- well, we have been gluten-free for two months now -- what are the chances that the test is going to give us what we want? I don't even know who to be more angry with -- the hospital who can't get the tests right, or my pediatrician for not knowing what the tests really were. I swear, when you get a good doctor it is fantastic, but when they are bad . . . ugh. . . nothing will make you lose faith in the medical community like having sick child.

We did have enterolabs tests done, which I posted a few days ago, and they certainly confirm a gluten sensitivity at the least -- but it doesn't sound like the hospital is interested in those tests.

Our enterolab tests also said that he does not have the celiac gene -- but does have two gluten sensitivity genes. I still don't understand -- his malabsorbtion scores were through the roof. Is it possible to have severe malabsorbtion issues and not have the villi damage that constitutes celiac? And if so, what the heck does it even matter then? I mean, if he is still having sub-microscopic damage being done that is causing the anemia, bloated belly, lack of appetite, etc. . . . if he runs the same associated risks, and all the same complications, why does "celiac" get the diagnosis and treatment at a clinic with a specialist, but "gluten intolerant" affords us nothing?

Hi bugsmom,

My son's blood results were almost identical to yours (IgG 29), the others negative (he did have the ttg test run though). We can't even get into our GI doctor until middle of October and we booked the appt in June. I'm following this thread to see what you find out as I have been very curious as to what the numbers mean as well and why wouldn't the others be positive if he has celiac. We haven't done enterolab yet but hope to pretty soon. I'm so sorry for the problems you've encountered so far. I hope you will figure everything out soon. Good luck!

mouse Enthusiast
mouse
Posted

I don't have a young child anymore as I am a grandmother of an almost 19 year old. But, this is crap. Please excuse my language. If you get the blood test done and it says positive, you then are told to see a GI, who then tells you that if you don't have a positive biopsy, then you do not have Celiac. This is so ridiculous. I am sorry to tell you that you would have to put your son back on gluten for about 3 to 6 months to redo the blood tests. But, if he is still bloated and is having severe bathrooms issues (after being gluten-free for 2 months), then I would think a biopsy might show that the villi are not standing up like they are suppose to do. The only thing is that the GI has to take the biopsies from 8 to 10 different places. I believe that there are some children on here that had negative blood tests, but positive biopsies. I think that you have to figure out a way to get beyond the GI doctor's staff and directly to him yourself. Can your ped. doc. call and get you in to him. Because of the bloating, etc. I really don't think that this should be fooled with.

bugsmom Rookie
bugsmom
Posted
  • Author
I don't have a young child anymore as I am a grandmother of an almost 19 year old. But, this is crap. Please excuse my language. If you get the blood test done and it says positive, you then are told to see a GI, who then tells you that if you don't have a positive biopsy, then you do not have Celiac. This is so ridiculous. I am sorry to tell you that you would have to put your son back on gluten for about 3 to 6 months to redo the blood tests. But, if he is still bloated and is having severe bathrooms issues (after being gluten-free for 2 months), then I would think a biopsy might show that the villi are not standing up like they are suppose to do. The only thing is that the GI has to take the biopsies from 8 to 10 different places. I believe that there are some children on here that had negative blood tests, but positive biopsies. I think that you have to figure out a way to get beyond the GI doctor's staff and directly to him yourself. Can your ped. doc. call and get you in to him. Because of the bloating, etc. I really don't think that this should be fooled with.

It is crap -- so much of this is crap.

There is no way that I am putting him back on gluten. This is a kid who, three months ago was still 90% breastfeeding. We were dealing with almost total food refusal and were fearing a feeding tube. He still isn't eating full meals like we would like, but he is a thousand times better than he was before. Diagnosis or no diagnosis, we are not going back to gluten. Neither he, nor my breasts, can handle going back there again. Even if we can't get in to the GI that I want. He actually isn't still bloated - that went away pretty quickly. He is still pretty constipated, but his diet isn;t very good yet. Most of what he eats is cheese. He loves cheese -- all kinds of cheese. No amount of fruits and veggies can offset th amount of cheese he eats. Our nutritionist was encouraging the cheese and ice cream because of the calories -- he has been the same wieight for well over a year. But the enterolab tests say that we need to get him off casein. This is probably a major factor in the continued constipation. We are working on it gradually because I don't know how to replace his foods just yet -- I don't know where to get the calcium and protein that he is currently getting from all the dairy. Even the calcium vitamins he takes have casein. Anybody know of a good children's chewable calcium that is casein free? This is part of the reason I wanted to get into the celiac

GI -- for help with the diet.

I guess if all else fails I will just keep searching for a better nutritionist -- and keep reading.

Guest nini
Guest nini
Posted

do what I did... keep your child gluten-free and tell the medical community that he is gluten intolerant and you are NOT going to put him through anymore testing to satisfy their morbid curiousity. Honestly it doesn't matter if it's Celiac or gluten intolerance as it's one and the same, and you are probably better off without a dx of Celiac on his permanent record. I will NEVER put my child back on gluten and now that she knows what happens when she accidentally is exposed to it, she will not willingly eat it either. If you want to pm me to ask any questions, feel free to do so, or e-mail me at nisla@comcast.net and also you can click on the link in my signature and go to the bottom of my web page and download the "newbie survival kit"

good luck and ignore the stupid Dr.s, the experts that I've spoken with agree that positive dietary response is the most valid indicator of gluten intolerance, and if the bloodwork was even slightly elevated you have your answer. Don't worry about it any more and get on with the business of keeping him gluten-free and healthy.

CarlaB Enthusiast
CarlaB
Posted

I, too, have two gluten intolerant genes. I also presented "classic celiac" symptoms. When I went to the GI for the first time (the second time for my negative biopsy was the last time ;) ), the doc listened to my symptoms, looked at me and said "celiac, but while we're testing for it, we're also going to test for other diseases that can accompany it." There was no doubt in his mind or mine. I did a six week gluten challenge, which I wouldn't wish on my worst enemy, and it wasn't long enough and the test came out negative. Truthfully, I don't know that it ever would have been positive because I don't have the celiac genes.

Keep in mind that at this point in time there seems to be more that they do not know about this disease than that they do know! You can keep him gluten-free without a doc's supervision. Maybe in a year have the absorption test redone to see if there's improvement -- or at least talk to Enterolab about doing that. Remember, there is a doctor who runs Enterolab!

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. Scott Adams
      - Scott Adams replied to Jmartes71's topic in Dermatitis Herpetiformis
      1

      Natural remedies

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living...
    2. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Gluten and short-term memory.

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sl...
    3. Scott Adams
      - Scott Adams replied to Suze046's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Reintroduction of Gluten

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly c...
    4. Scott Adams
      - Scott Adams replied to Rejoicephd's topic in Coping with Celiac Disease
      2

      Draft gluten-free ciders… can they be trusted ?

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained...
    5. Scott Adams
      - Scott Adams replied to Mykidzz3's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      High Cost of Gluten-Free Foods

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,369
    • Most Online (within 30 mins)
      7,748
    Nick H.
    Newest Member
    Nick H.
    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

    • Scott Adams
      Natural remedies

      By Scott Adams · Posted

      While it's always important to approach internal use of essential oils with caution and ideally under the guidance of a qualified professional, your experience highlights the potential of complementary approaches when traditional medicine falls short. Many in the community are also interested in the intersection of natural wellness and gluten-free living, particularly for managing systemic inflammation and its various symptoms, so sharing your story is valuable. Your observation that it may also be helping with bloating is fascinating, as that could point to an overall reduction in inflammation. Thank you for sharing what is working for you!
    • Scott Adams
      Gluten and short-term memory.

      By Scott Adams · Posted

      It's interesting how a single, clear moment—like struggling during a game—can suddenly connect all the dots and reveal the hidden impact of gluten exposure. Your experience with short-term memory fog is a very real and documented symptom for many individuals with gluten sensitivity, often occurring alongside the other issues you mentioned like mood disturbances, sleep disruption, and digestive irregularity. It's a frustrating and often invisible effect that can make you feel unlike yourself, so that moment of clarity, though born from a tough dominoes match, is actually a powerful piece of self-knowledge. Identifying a specific culprit like that steak strip is a huge win, as it arms you with the information needed to avoid similar pitfalls in the future and protect your cognitive clarity. You are definitely not alone in experiencing this particular set of neurological and physical symptoms; it's a strong reminder of gluten's profound impact on the entire body, not just the digestive system. Supplementation may help you as well.  The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.      
    • Scott Adams
      Reintroduction of Gluten

      By Scott Adams · Posted

      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. What you're describing is a very common and frustrating experience when reintroducing gluten after a period of avoidance, and your timeline is perfectly consistent with a non-celiac gluten sensitivity. While a celiac reaction can be more immediate, a sensitivity reaction is often delayed, sometimes taking several days to manifest as your body's inflammatory response builds up; the fact that your symptoms returned a few days after reintroduction is a strong indicator that gluten is indeed the culprit, not a coincidence. Your doctor's advice to reintroduce it was necessary to confirm the diagnosis, as the initial negative celiac test and subsequent improvement on a gluten-free diet pointed strongly towards sensitivity. Many in this community have gone through this exact same process of elimination and challenging, and it's wise to reintroduce gently as you did. Given your clear reaction, the best course of action is likely to resume a strict gluten-free diet, as managing a sensitivity is the primary way to control those debilitating symptoms and allow your body to heal fully.
    • Scott Adams
      Draft gluten-free ciders… can they be trusted ?

      By Scott Adams · Posted

      Your suspicion is almost certainly correct, and you are wise to be cautious. Draft cider is a very common and often overlooked source of cross-contact because the same tap lines are frequently used for both beer and cider; unless a bar has a dedicated line for gluten-free beverages, which is rare, the cider will run through tubing that has previously contained gluten-containing beer, contaminating your drink. The fact that you didn't react at a clean brewery suggests they may have had more meticulous practices or separate lines, but this is the exception, not the rule. Many in the community have had identical experiences, leading them to strictly avoid draft cider and opt for bottled or canned versions, which are poured directly from their sealed container and bypass the contaminated tap system entirely. Switching to bottles or cans is the safest strategy, and your plan to do so is a smart move to protect your health. PS - here are some articles on the topic:    
    • Scott Adams
      High Cost of Gluten-Free Foods

      By Scott Adams · Posted

      Your post really highlights the financial and emotional struggle so many families face. You are not alone in feeling frustrated by the high cost of gluten-free specialty items and the frustrating waste when your daughter can't tolerate them. A great place to start is by focusing on naturally gluten-free whole foods that are often more affordable and less processed, like rice, potatoes, beans, lentils, corn, eggs, and frozen fruits and vegetables—these are nutritional powerhouses that can form the basis of her meals. For the specialty items like bread and pasta, see if your local stores carry smaller, single-serving packages or allow returns if a product causes a reaction, as some companies understand this challenge. Regarding vitamins, that is an excellent next step; please ask her doctor to prescribe a high-quality gluten-free multivitamin, as insurance will often cover prescribed vitamins, making them much more affordable. Finally, connecting with a local celiac support group online can be a treasure trove of location-specific advice for finding the best and most affordable products in your area, saving you both time and money on the trial-and-error process. 
×
×
  • Create New...