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

Non-celiac Newbie: What In The World Do I Do Next?

ChickensDon'tClap

Recommended Posts

ChickensDon'tClap Rookie
ChickensDon'tClap
Posted

Hi everyone! I am new here. I do not have celiac disease, but I have been gluten free since October. I had a blood test done to see if I had celiac disease, and it came back negative. My gastro told me just to not eat gluten anymore if it was bothering me. He made it sound simple, and I hope he was right!

I have been feeling pretty good up until recently. The nausea, diarrhea, and eye twitching have started to come back. I also have eczema patches on my inner elbows and neck, and my acid reflux has started to bother me recently as well.

I have been lactose intolerant since 2001, but Lac-Taid has always helped me eat dairy products. I'm trying to figure out if I need to eliminate dairy altogether or if it could be something else that is bothering me. I had eaten a lot of red meat recently and decided to stop eating that because I thought it could be what was causing my problem. I eat eggs pretty often, so I guess they could be the culprit as well. I've also started researching candida and figured that could be part of the problem.

What I'd like to do is get some kind of "test" done that could tell me what is causing me to feel so crappy. I'm just not sure what route I should take. Should I go back to my gastro and have him test me or should I go see an allergist? I get the feeling that my gastro isn't all that knowledgable about food allergies and intolerances. Or should I find a gastro who is very familiar with these issues. I'm sure there are a few in the northern VA area. I see that people do the tests themselves using EnteroLabs so I guess this is an option too. I just have no idea where I should be headed! Any advice would be welcome!

Thanks in advance!

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

Celiac.com Sponsor (A8-M):


Jenny (AZ via TX) Enthusiast
Jenny (AZ via TX)
Posted

Since you say you do not have celiac, did you have the bloodwork done? Sometimes you can get a false negative. If your villi are damaged, the lactaid may not be enough to help you. Casein may be the problem. You may want to try giving up dairy and see what happens.

Also, once people go gluten free, sometimes other sensitivities show up. Many people seem to have problems with corn, soy and dairy. Maybe try an elimination diet.

Also, especially in the beginning, many of us continued to eat gluten unknowingly. For me it was in some of my supplements and a deli-roasted chicken I thought was gluten-free. Also, you may still be getting gluten through cross contamination. Are you still using the same toaster?

I'm sure someone, maybe a moderator, can add to this.

Amber M Explorer
Amber M
Posted
Hi everyone! I am new here. I do not have celiac disease, but I have been gluten free since October. I had a blood test done to see if I had celiac disease, and it came back negative. My gastro told me just to not eat gluten anymore if it was bothering me. He made it sound simple, and I hope he was right!

I have been feeling pretty good up until recently. The nausea, diarrhea, and eye twitching have started to come back. I also have eczema patches on my inner elbows and neck, and my acid reflux has started to bother me recently as well.

I have been lactose intolerant since 2001, but Lac-Taid has always helped me eat dairy products. I'm trying to figure out if I need to eliminate dairy altogether or if it could be something else that is bothering me. I had eaten a lot of red meat recently and decided to stop eating that because I thought it could be what was causing my problem. I eat eggs pretty often, so I guess they could be the culprit as well. I've also started researching candida and figured that could be part of the problem.

What I'd like to do is get some kind of "test" done that could tell me what is causing me to feel so crappy. I'm just not sure what route I should take. Should I go back to my gastro and have him test me or should I go see an allergist? I get the feeling that my gastro isn't all that knowledgable about food allergies and intolerances. Or should I find a gastro who is very familiar with these issues. I'm sure there are a few in the northern VA area. I see that people do the tests themselves using EnteroLabs so I guess this is an option too. I just have no idea where I should be headed! Any advice would be welcome!

Thanks in advance!

Welcome, I started out the same way. Blood test negative, etc. I went to an allergist and did the elimination diet. I had already been allergic to soy for years and since gluten free, I can't eat any grains other than rice. After reading "The Gluten Connection", I understand so much more. I do not have full blown celiac, but severe gluten sensitivity. I opted for the gene test through Entrolab because I am the type that needed to know. I have the gluten sensitive genes that cause gluten ataxia, neuropathy and lower colon problems, which then explained ALL of my health problems for many years.

My suggestion is to read, read, read, and see an allergist and a doctor that understands the full scope of gluten sensitivity, not just celiac. It is just as serious as it still causes an anti-body reaction that attacks many organs as well as the brain. I learned a lot on this forum. Sift around and read it all! Good luck. I'm still on the hunt for an educated MD, but my allergist seemed to know the most in my area. (Maine)

ChickensDon'tClap Rookie
ChickensDon'tClap
Posted
  • Author

Thanks, guys, for your replies! Trying to figure everything out has been really tough.

Jenny, yes, I had the test done, but I was not smart enough at the time to ask what this "test" was called or for a copy of my results. Now I know better so I am going to call my doctor in the morning and ask for this info.

Cross-contamination could definitely still be a factor. I hadn't thought about replacing my toaster, but that really makes sense! Will head to Bed Bath and Beyond this weekend!

I have been hoping like crazy that I do not have a casein issue, because I am a cheese freak, but I guess I have to prepare for the worst. I will set up an appointment with my allergist tomorrow to get started on some testing. I am so sick of feeling like crap!

Thanks again for the advice! There is so much to learn that I feel like taking the day off from work and just reading, but I guess that wouldn't be possible. :lol:

Amber M Explorer
Amber M
Posted
Thanks, guys, for your replies! Trying to figure everything out has been really tough.

Jenny, yes, I had the test done, but I was not smart enough at the time to ask what this "test" was called or for a copy of my results. Now I know better so I am going to call my doctor in the morning and ask for this info.

Cross-contamination could definitely still be a factor. I hadn't thought about replacing my toaster, but that really makes sense! Will head to Bed Bath and Beyond this weekend!

I have been hoping like crazy that I do not have a casein issue, because I am a cheese freak, but I guess I have to prepare for the worst. I will set up an appointment with my allergist tomorrow to get started on some testing. I am so sick of feeling like crap!

Thanks again for the advice! There is so much to learn that I feel like taking the day off from work and just reading, but I guess that wouldn't be possible. :lol:

One thing I want to metion about the food allergy tests is a lot of the time they come out negative even though you know a certain food bothers you. My allergist said that food allergies are the most difficult to deal with and the tests are not totally reliable. For instance, if I eat a lot of soy or beans I go into shock and stop breathing. I have had emergency room visits more than a few times for this and almost died!!!! My test came back negative!!! I know for sure that it is beans that do this and an overabundance of soy! This is why my allergist does the elimination and re-introduction diet. It is a pain, but your body will tell you a lot quicker than a blood test. I do not know why, but be aware of this when you get tested. The diet is the sure way. Good luck. We are here for you, but can not replace good research.

Archived

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

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


  • Member Statistics

    • Total Members
      127,954
    • Most Online (within 30 mins)
      7,748
    Godfather
    Newest Member
    Godfather
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121k
    • Total Posts
      70.5k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Beverage
      Vaccines

      By Beverage · Posted

      I feel for you. I've had an interesting history with some vaccine, especially t-DAP. One time after just getting it, I remember walking from the pharmacy to my car, reaching for the door handle of my car as my last memory, then waking up slumped into my car with the door wide open hours later. Nobody even knew I was there. I did get a bad cut from rotting rusty wood and probably animal droppings, and it had been 10 years, so I got a booster recently, but took someone with me. My doc back then did say he was concerned about my reactions to vaccines, but we never talked about what alternatives there might be. What is your risk when you do get sick? For me, I almost always end up needing prednisone and antibiotics and have to crawl back to life for months after those are done, prednisone really messes me up, raises my blood pressure to stroke levels, and the antibiotics mess up my intestines really bad. I have to take mega doses of C and D and B's, especially flush niacin, and probiotics.  So preventing flu is critical for me since I always get a long term negative effect from the treatment. I did a lot of research, traditional and alternative medicine, and they all say high vitamin D levels are crucial to so many kinds of illnesses, including flu, cancer, etc.  People with high D during covid had much better outcomes.  I always tested low in D even with high oral supplementation of D3 and K2.  So last year I saved up and bought a real vitamin D lamp, not one of those cheapie ones that you can get on Amazon that don't work, seriously, those are junk. Wow what a difference with a real D Lamp. We haven't been sick all year, which is rare for me, even after being around several sick people or people that came down sick just after visiting. I use the lamp about every other day or if I've been in a group of people or around anyone sick.  I have not yet had my D levels retested since starting with it (will do that at annual check up later this year), but I have not gotten a cold or flu (knock on wood), feel better than usual for a cold wet winter in the NorthWest, and my hair is growing in like crazy, all signs of improved vitamin D levels. It doesn't take long to use, just a few seconds and first and gradually build up. I now do it for a count of 200, which is about 3 minutes. I don't remember all the details on how the body creates its own vitamin D, but I do remember that the body makes a reaction on the skin and you don't want to wash that off for a few hours.  So I do the D Lamp right after my shower, not before.  There are 2 reputable ones that I found in my research: Sperti Vitamin D Lamp uses florescent tubes, you stand and turn in front of it, be sure to get the VITAMIN D LAMP, not the tanning lamp:  https://www.sperti.com/product/sperti-vitamin-d-light-box/ Chroma Vitamin D Lamp is LED's, you can stand and turn in front of it or hold it in your hand and wave it over your body, always keeping it moving so you don't burn:  https://getchroma.co/products/d-light-vitamin-d-light-device-uvb-red-nir AND YOU MUST WEAR SPECIFIC EYE PROTECTION WHEN USING, KEEP ALL PETS AND OTHERS AWAY, THE GLASSES ARE PROVIDED WITH THE D LAMP. I got the Chroma D Lamp when they had a huge sale last year, it's a small start-up company in Seattle.  Sperti is a larger longer term well known, and you can sign up for a 10% discount on their web site.  If Chroma had not had the sale when I was going to buy one, the Sperti would have been fine. They both often have back orders on them, but they do deliver as promised. I have read various articles on the effectiveness of the flu vaccine for example, not always highly effective every year.  Since your risk with vaccines is high, or if your risk of bad illness if you get sick is high, maybe consider how to mitigate both in another way, perhaps a D Lamp. 
    • trents
      Facial pain

      By trents · Posted

      That's what came immediately to my mind as well, Bell's palsy. And don't assume every medical problem is connected to her celiac disease as there is still something known as coincidence. Get this checked out by medical professionals and push for some serious testing. Don't let them brush you off. Be appropriately assertive.
    • Mnofsinger
      Facial pain

      By Mnofsinger · Posted

      Hi @CeliacMom502, As always, consult a medical professional on any advice you receive.  I experience have experienced this exact symptoms you're referring to and will receive them, typically after being accidentally glutened. I've recently been researching this (that's how I came across this posting), because I've been trying to nail down how long I've actually had the celiac genes "activated" or if I was just born with it. Now I wasn't diagnosed until 2023 with Celiac Disease, but not all these other health issues I've had previously point to it all connecting. In 2013 I ended up with Bell's Palsy that I had facial paralysis on one side of my face, where I couldn't even get a twitch for six months, but it took almost a year for "full recovery". I have now came to the conclusion that, because of the B12 vitamin deficiency caused by celiac disease (when not following a strict gluten free diet), caused me to have prolonged recovery from this, because the nerves were healing at a much lower rate> I'm not sure if your daughter has ever had Bell's Palsy, but ever since I have, some of my symptoms when I accidentally get glutened (including right now as I type this message 😄) include a migraine that goes across my eyes, and a shooting pain as you have described that will go across my left cheek and upper jaw, in addition to pain behind my left ear, and painful to the touch. Now, I did immediately go on a gluten free diet, and almost all these symptoms vanished after 3-4 months, but that time frame depends upon the "damage" already done previously.  Hope my situation helps even now this is now almost three years later from your message!  
    • Scott Adams
      Celiac-safe home for summer rental in Washington DC

      By Scott Adams · Posted

      It's nice to see celiac-safe options out there for guest homes.
    • Scott Adams
      How many grams is there in one slice of wheat bread?

      By Scott Adams · Posted

      Your situation involves interpreting elevated Deamidated Gliadin Peptide (DGP) IgG levels, which can indeed be confusing without clear symptoms or additional diagnostic tools like a biopsy. Here’s a possible approach to help clarify your next steps: Understanding DGP IgG: DGP IgG is a blood test often used to help diagnose celiac disease, particularly in individuals with IgA deficiency. However, since you’ve confirmed you don’t have IgA deficiency, the focus should shift to other celiac-specific tests, such as tissue transglutaminase IgA (tTG-IgA) and endomysial antibodies (EMA-IgA), which are more specific for celiac disease. Elevated DGP IgG alone is not diagnostic of celiac disease but may indicate gluten-related immune activity. Non-Celiac Gluten Sensitivity (NCGS): You’re correct that NCGS does not typically show abnormalities in blood tests like celiac disease does. NCGS is diagnosed based on symptoms (e.g., bloating, fatigue, brain fog) that improve on a gluten-free diet, after celiac disease and wheat allergy have been ruled out. Since you don’t currently have symptoms, NCGS seems less likely in your case. Possible Next Steps: Monitor Symptoms: If you remain asymptomatic, it’s reasonable to continue eating gluten and retest after some time. This is because celiac disease can develop or become symptomatic later, and ongoing gluten consumption is necessary for accurate testing. Repeat Testing: Consider repeating the tTG-IgA test, as it is the most sensitive and specific for celiac disease. If this is also elevated, it strengthens the case for further investigation. Genetic Testing: If available, HLA-DQ2 and HLA-DQ8 genetic testing can help rule out celiac disease if negative, as nearly all celiac patients carry one or both of these genes. However, a positive result doesn’t confirm celiac disease, as these genes are common in the general population. Dietary Trial: If testing remains inconclusive and you develop symptoms, a supervised gluten-free diet trial might provide clarity. However, this should only be done after thorough testing, as going gluten-free prematurely can interfere with accurate diagnosis. Biopsy Limitation: Since a biopsy is not available in your town, you’ll need to rely on blood tests and clinical judgment. If your tests remain inconclusive but you develop symptoms, you may need to travel to a facility that can perform a biopsy for definitive diagnosis. In summary, if I were in your position, I would continue consuming gluten, monitor for symptoms, and retest with more specific celiac markers (tTG-IgA and EMA-IgA) in a few months. If symptoms develop or tests remain ambiguous, consulting a gastroenterologist for further guidance would be advisable. Always work with a healthcare provider to interpret results and tailor next steps to your specific situation.
×
×
  • Create New...