Jump to content

  • 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

Continue Further Testing?

marie75

Recommended Posts

marie75 Newbie
marie75
Posted

Hi all,

This is my first time posting. I've been having some atypical symptoms, most prominently a case of cystitis that wouldn't clear up. I was having terrible problems with urinary frequency, urgency and excessive urination. I also had an extremely uncomfortable burning sensation that was hard to pin down, not sure if it was bladder or lower intestine. It was just below the belly button, but radiated to the left and right sides as well. After a few rounds of antibiotics didn't clear it up, my doctor suggested there might be a food allergy and/or gluten intolerance. I did a urine test for intestinal permeability, and the results showed that I had malabsorption. My doctor diagnosed me with having a gluten intolerance, and in the mean time I had removed gluten from my diet and saw a great improvement for my urinary sypmtoms. I also saw an improvement with concentration, memory, fatigue and depression. I'm at a crossroads now where I'd like to get the blood test for Celiac antibodies (celiac disease runs in my family, I have 5 cousins who are diagnosed). However, I've been off gluten for 3.5 weeks now, and I'm wondering how long I'll need to eat gluten to get accurate results, and if I should even bother putting myself through that. If symptoms return, does that mean my body is producing anti-bodies? Also, if you have a gluten intolerance rather than Celiac, are you still at risk for similar auto-immune problems? Any advice would be really appreciated! Thanks!

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

If you feel you need to be tested then go back on gluten for at least 2 to 3 months. If your symptoms return after you add gluten back in that is pretty diagnostic in itself. Be aware that there are false negatives on testing, with both blood and biopsy. It is how your body reacts that counts the most. With a strong family history of celiac and your good results on the diet chances are you do need to be gluten free.

marie75 Newbie
marie75
Posted
  • Author

If you feel you need to be tested then go back on gluten for at least 2 to 3 months. If your symptoms return after you add gluten back in that is pretty diagnostic in itself. Be aware that there are false negatives on testing, with both blood and biopsy. It is how your body reacts that counts the most. With a strong family history of celiac and your good results on the diet chances are you do need to be gluten free.

Hi and thanks for your reply! Wow, 2-3 months, I don't think I want to do that. My doctor suggested 2 weeks since I haven't been off gluten for that long. Is that possible?

ravenwoodglass Mentor
ravenwoodglass
Posted

Hi and thanks for your reply! Wow, 2-3 months, I don't think I want to do that. My doctor suggested 2 weeks since I haven't been off gluten for that long. Is that possible?

It could be long enough since you have only been gluten free for under a month but it could also be a false negative. The challenge may tell you what you really need to know if you react badly to it.

marie75 Newbie
marie75
Posted
  • Author

It could be long enough since you have only been gluten free for under a month but it could also be a false negative. The challenge may tell you what you really need to know if you react badly to it.

Thanks, I appreciate the advice! :)

eatmeat4good Enthusiast
eatmeat4good
Posted

I want to speak to your problem with cystitis, and burning pain.

I have had recurrent intermittent cystitis all my life.

Often took antibiotics on a daily basis "to control the bacteria".

Often there was no bacteria when my urine was tested.

It was very surprising to find that all of these symptoms disappeared when I went gluten free 4 months ago.

I now believe it was related to the inflammation caused by gluten and malabsorption of even fluids.

I often had symptoms of dehydration.

Since this is not a common symptom of Celiac, or gluten intolerance, I did not expect it to improve.

However, it is completely gone.

Just wanted to give you some hope on that issue because it has been a great relief to me.

I hope it is for you too.

marie75 Newbie
marie75
Posted
  • Author

I want to speak to your problem with cystitis, and burning pain.

I have had recurrent intermittent cystitis all my life.

Often took antibiotics on a daily basis "to control the bacteria".

Often there was no bacteria when my urine was tested.

It was very surprising to find that all of these symptoms disappeared when I went gluten free 4 months ago.

I now believe it was related to the inflammation caused by gluten and malabsorption of even fluids.

I often had symptoms of dehydration.

Since this is not a common symptom of Celiac, or gluten intolerance, I did not expect it to improve.

However, it is completely gone.

Just wanted to give you some hope on that issue because it has been a great relief to me.

I hope it is for you too.

Thanks for that! It's great to hear that I'm not alone in having symptoms of cystitis. There doesn't seem to be much reported about that particular symptom. I did see quite a lot of improvement (I'd say about 90% better) with the removal of gluten, so I believe in time that should clear up altogether. I'm glad that it did for you. Quick question, do you have a non-celiac gluten intolerance or did you get a diagnosis for Celiac?

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

Celiac.com Sponsor (A8-M):


salexander421 Enthusiast
salexander421
Posted

I'm not at all an expert but I do know it can take adults up to 2 years to completely heal. If you are going to do the gluten challenge and get tested I would do it sooner rather than later, the longer you're gluten free the more your body is going to heal.

marie75 Newbie
marie75
Posted
  • Author

I'm not at all an expert but I do know it can take adults up to 2 years to completely heal. If you are going to do the gluten challenge and get tested I would do it sooner rather than later, the longer you're gluten free the more your body is going to heal.

Thanks! That's pretty much what I figure, it's now or never. I think I'm going to give it a try and see how it goes. I can always abandon ship and go back to gluten free if it gets too tough.

  • 2 weeks later...
marie75 Newbie
marie75
Posted
  • Author

Thanks! That's pretty much what I figure, it's now or never. I think I'm going to give it a try and see how it goes. I can always abandon ship and go back to gluten free if it gets too tough.

N.B. To anyone following this thread, I subsequently tried a gluten challenge and lasted about 3 days. Suffered anxiety, panic attacks, depression, difficulty concentrating, itchy ears, acne, and a return of the cystitis-like symptoms. I decided to give it up and just live with not knowing whether it's a non-Celiac gluten sensitivity or actually Celiac. The result is still the same, I still need to avoid gluten at all costs! Thanks to all who posted.

eatmeat4good Enthusiast
eatmeat4good
Posted

Thanks for that! It's great to hear that I'm not alone in having symptoms of cystitis. There doesn't seem to be much reported about that particular symptom. I did see quite a lot of improvement (I'd say about 90% better) with the removal of gluten, so I believe in time that should clear up altogether. I'm glad that it did for you. Quick question, do you have a non-celiac gluten intolerance or did you get a diagnosis for Celiac?

Sorry I missed your question. I am certainly Celiac but without testing. I have Dermatitis Herpetiformis and have had it for 7 years. No Dermatologist would biopsy...and I tried several. I have to be very strictly gluten free or my sores flare. Hope you are doing well.

eatmeat4good Enthusiast
eatmeat4good
Posted

Thank you for posting that result.

That is precisely why I don't advocate testing. By the time you realize what you need to be tested for, you have already found your answer. My Dr. said, "Why would I tell you to eat gluten so I can test you and then tell you that you should stay off of gluten? The gluten elimination and challenge is 100% accurate."

Thank God for voices of reason.

Congratulations on not having to feel so terrible anymore.

I'm really happy for you!

marie75 Newbie
marie75
Posted
  • Author

Thank you for posting that result.

That is precisely why I don't advocate testing. By the time you realize what you need to be tested for, you have already found your answer. My Dr. said, "Why would I tell you to eat gluten so I can test you and then tell you that you should stay off of gluten? The gluten elimination and challenge is 100% accurate."

Thank God for voices of reason.

Congratulations on not having to feel so terrible anymore.

I'm really happy for you!

Thanks eatmeat4good! I appreciate your support. Just wondering, how long did it take for your cystitis symptoms to clear up? I've noticed significant improvement, but still not 100% better yet. It's only been 10 days since I ended the gluten challenge, but I still have intermittent symptoms. I've been keeping a food journal, but it's hard to find a pattern. Right now I'm doing a total elimination diet, so basically just eating meat, vegetables, corn and rice based things (some fruit too).

eatmeat4good Enthusiast
eatmeat4good
Posted

I would say it took about a month not to have the bladder spasms at all anymore. I was noticing it less and less and then didn't have it at all. I thought that is the weirdest thing if this is related to gluten too! But guess what? It is totally related to gluten. For me anyway.

Taking fish oil and vitamin C for their anti-inflammatory properties helped a lot too. I think. :)

marie75 Newbie
marie75
Posted
  • Author

I would say it took about a month not to have the bladder spasms at all anymore. I was noticing it less and less and then didn't have it at all. I thought that is the weirdest thing if this is related to gluten too! But guess what? It is totally related to gluten. For me anyway.

Taking fish oil and vitamin C for their anti-inflammatory properties helped a lot too. I think. :)

Oh cool, I'll have to give the fish oil a try. I'm taking a good hypoallergenic multi right now that has plenty of C in it. It's a lot better now, but still having a terrible burning sensation in my abdomen that sort of comes and goes without a pattern that I can tell. Ugh. I think dairy and eggs are a problem for me all of a sudden, and caffeine seems to make things worse too. Hopefully things will clear up the rest of the way soon. Thanks!

Archived

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

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


  • Member Statistics

    • Total Members
      131,550
    • Most Online (within 30 mins)
      7,748
    Blough
    Newest Member
    Blough
    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
      Taken Seriously

      By Scott Adams · Posted

      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      Looking for a gluten-free roomie in Denver CO

      By Scott Adams · Posted

      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Allergy medication: cetirizine by the HealthA2Z is it gluten free?

      By Scott Adams · Posted

      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      Protein or fat?

      By Scott Adams · Posted

      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. 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 may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      Diagnosed celiac for 1-2 months ago and everything makes me bloated.

      By Beverage · Posted

      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.