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 Celiac.com!
    eNewsletter
    Donate

Long Time Gluten Free Still Having Pain


ArriettyPC

Recommended Posts

ArriettyPC Newbie

I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Celiac Mindwarp Community Regular

Hi there

Sounds like something going on still. Have a look at the newbie101 thread in the coping with section. Many of us spot places we could be getting cross contamination.

One other possibility is that you could (also??) have developed food intolerances, which many of us seem to do.

Read around and ask questions, we will do our best to help you get to the bottom of it :+

Welcome to the board!

Link to comment
Share on other sites
flowerqueen Community Regular

I agree with the above comment. I have had similar issues and am intolerant to dairy and have had difficulty getting enough fibre in my diet (until recently) since becoming gluten free - being a sufferer of IBS for 30 years. Keep a food journal to see if anything shows up there.

Link to comment
Share on other sites
GFinDC Veteran

Hi ArriettyPC,

 

5 years should be more than enough time to heal your gut from celiac damage.  But, as others said, there are other possible food intolerances that can cause problems also.  Some celiacs have an immune reaction to oats like they do to wheat, rye and barley.  There are  great number of other food intolerances that can cause symptoms.  Nightshades, soy, dairy, eggs, nuts, corn, the list goes on and on.  Finding out if you have any additional food intolerances is kind of a detective game for each person.  Since each of us can develop our own reactions.  A good first step would be to make 100% sure there is no gluten or cc sneaking into your diet.  After that you could try an elimination diet.  There are many threads about elimination diets on the forum.

Link to comment
Share on other sites
Deaminated Marcus Apprentice

I did a food intolerance test and some of it concordanced  with the foods I had listed prior to the test like Kidney beans.

The test pointed out many others like peas, oats, etc.

 

 

You could talk to your doctor if he-she thinks you should be getting a colonoscopy for your abdominal pains.

Link to comment
Share on other sites
Em314 Explorer

ArriettyPC- have you had your blood levels of gluten antibodies checked?  That might be a relatively quick and non-invasive way to get an inkling of whether it's gluten hiding in your diet, or something else.  5 years of being gluten-free without relief from pain doesn't sound normal, expectable or something you should accept.

Link to comment
Share on other sites
frieze Community Regular

GYN issues ruled out?

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I've been gluten free for nearly 5 years now and I'm still having a lot of trouble with pain in my lower abdomen. I freaked out really bad once, because it was in the same place as when my step-dad's appendix burst, spent 4 hours in the hospital and a very expensive MRI to have the doctors say they couldn't find any reason for it to hurt.

I try to be very careful, but am I crazy? Am I not being careful enough? Is there anything I can do to make it go away? I've gotten so use to not feeling good, do I need to just stop complaining about it?

I have a strong family history of non-functioning gallbladders.  No stones (they'd show up on an MRI or Ultrasound), just lower abdominal pain (not near my gallbladder).  The pain was severe enough for me to pass out!  A HIDA scan confirmed the diagnosis and surgery cured the problem (gallbladder was infected/rotting) by then. I've read there's a strong correlation between non-functioning gallbladders, pancreatic issues and celiac disease.  

 

As other suggested, food allergies/intolerances can develop at anytime and symptoms can be immediate or delayed (up to 48 hours).  

Link to comment
Share on other sites
ArriettyPC Newbie

I haven't had my blood checked, but I think contamination might be the problem. I live with people who..."don't see the big deal" with gluten intolerance or my other food allergies. I try to be very careful, but I'm guessing I'm not being careful enough. Thank you for all the help. I feel kind of silly, I've done the food journals and all and thought I was done with it years ago. Thanks again.

Link to comment
Share on other sites
cavernio Enthusiast

If it's cc from your house or work or someplace else besides the food product itself, journals will miss it because it's intermittent and not related to the food itself, but other things like who ate right before you in the kitchen, etc.

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - BluegrassCeliac replied to lasthope2024's topic in Food Intolerance & Leaky Gut
      7

      This forum might be the last hope I have in my life. Please I beg you

    2. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    4. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,068
    • Most Online (within 30 mins)
      7,748

    DaciaDH
    Newest Member
    DaciaDH
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BluegrassCeliac
      Hi,   Not saying Thiamine (B1) couldn't be an issue as well, but Mg was definitely the cause of my problems. It's the only thing that worked. I supplemented with B vitamins, but that didn't change anything, in fact they made me sick. Mg stopped all my muscle pain (HCTZ) within a few months and fixed all the intestinal problems HCTZ caused as well. Mom has an allergy to some sulfa drugs (IgG Celiac too), but I don't think I've ever taken them. Mg boosted my energy as well. It solved a lot of problems. I take 1000mg MgO a day with no problems. I boost absorption with Vitamin D. Some people can't take MgO,  like mom, she takes Mg Glycinate. It's one of those things that someone has try and find the right form for themselves. Everyone's different. Mg deficiency can cause anxiety and is a treatment for it. A pharmacist gave me a list of drugs years ago that cause Mg deficiency: PPIs, H2 bockers, HCTZ, some beta blockers (metoprolol which I've taken -- horrible side effects), some anti-anxiety meds too were on it. I posted because I saw he was an IgG celiac. He's the first one I've seen in 20 years, other than my family. We're rare. All the celiacs I've met are IgA. Finding healthcare is a nightmare. Just trying to help. B  
    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
×
×
  • Create New...