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

You Probably Get A Lot Of These, But I'm Lost


Future-MrsCornell

Recommended Posts

Future-MrsCornell Newbie

I know you all probably get a lot of the newbies wondering if their symptoms are indicators of Celiac's Disease, and I'm sorry I'm adding yet another, but I've hit a brick wall here.

I am 24 years old and have had digestive issues for as long as I can remember. I was diagnosed as having IBS when I was 4 due to malabsorption and another doctor when I was 6 recommended my avoiding certain carbohydrates as well as drinking Ensure (wretched stuff, that is).

I seemed to get my diet in order and was actually putting on weight, height and muscle mass once I was in high school. I went from being 4 feet 5 inches and 85 pounds my sophomore year to 5 feet 6 inches and 125 pounds by my senior year. All seemed to be well until I was in the military. My diet changed. I started feeling fatigue, my joints and bones ached and my weight became a roller coaster again. I thought it was just the rigorous physical routine I had, but my problems didn't change once I left the Army. They seemed to get worse.

I have had sever lower abdominal pain for over a year now. It is constant at a 7 (scale from 1-10) and can escalate to a 9, robbing me of sleep (Which may explain the fatigue). My joints still ache and I feel the stress fracture pain that I was assured would heal once I returned to civilian life. I do have muscle aches, but usually write those off being that I live in Arizona and can possibly be dehydrated. My pinkie and ring nails are detaching from the nail bed, I have pin point blisters on the knuckles and between my fingers. Most fun of all is the constipation. (I know how you love to study stool) WHEN I DO void, there is a white sheeth like substance that is currently blood red. Fun Fun.

The worst symptom of all is my mood. I work in a K-8th school and love my job. I've always loved working with kids, but as of late I am considering a field change. I get tired and irritable and fear that it interferes with the occupation I adore so much.

This is so stupid. I am crying to write this. I do that so much now. I used to be so strong, but this pain and irritability overwhelms me. If anyone knows anything that could help, I would appreciate it very much.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



key Contributor

It definitely sounds like you could have celiac disease. You have alot of symptoms. I would try and find a good GI doctor that is up on the latest research with celiac. It says that constipation is definitely a symptom in some people. In the past they thought you had to have severe diarhea. I am sorry you have suffered your whole life so much. I hope you get some relief soon. If a doctor won't diagnose you, then you can simply go gluten free on your own. It would definitely benefit you to have the blood work and biopsy before going gluten free. There are many of us here that didn't have conclusive results. I had borderline blood tests after two months of being gluten free. I chose not to have the biopsy. My son that is 2 also has celiac.

Take care and welcome to this board. If you stick around you will learn alot.

Monica

Link to comment
Share on other sites
Guest nini

I sent you an e-mail. Welcome to the board and good luck!

Link to comment
Share on other sites
Future-MrsCornell Newbie

Thank you both very much. I am contacting my doctor tomorrow to request the referral. He's a pretty good guy and said he would write one up for me even with just a phone call. My fiance said he would eat his @** hole if I was diagnosed with Celiac's. I invision a gluten-free cake in the shape of a butt with strategically placed brown frosting in the future. LOL I told him later that that hurt. I know I seem to be grasping at straws, but I just want to know why I'm hurting. If I know the why, then I can know the remedy. He apologized cuz he's nice like that.

Link to comment
Share on other sites
nettiebeads Apprentice
Thank you both very much. I am contacting my doctor tomorrow to request the referral. He's a pretty good guy and said he would write one up for me even with just a phone call. My fiance said he would eat his @** hole if I was diagnosed with Celiac's. I invision a gluten-free cake in the shape of a butt with strategically placed brown frosting in the future. LOL I told him later that that hurt. I know I seem to be grasping at straws, but I just want to know why I'm hurting. If I know the why, then I can know the remedy. He apologized cuz he's nice like that.

Oh yeah, celiac is quite an education for those who have it and those who live with them. My husband is great like that too. Loves figuring out how to make regular foods gluten free for me (he's an ex-sous chef)

Anyhow, see the dr, get the celiac blood panel done, and the biopsy if ordered, then go gluten-free right away and see what happens. You might want to go dairy free right now as that won't skew the results and if it is celiac, the damage done to the villi will keep you from digesting dairy until they heal. Please keep us posted as to your progress. There's lots and lots of good info and experience on this board.

Annette

Link to comment
Share on other sites
Guinevere Newbie

sounds exactly like celiac, you've come to the right place. keep browsing through this site and you'll get lots of info. you can also check out another site that i have found to be very helpful:

Open Original Shared Link

Link to comment
Share on other sites
tarnalberry Community Regular

you absolutely need to follow up with a doctor, particularly with blood on the stool. it could be celiac, though it could be a number of other things. I would encourage you to insist upon the celiac panel during testing, due to the malabsorption and IBS diagnosis early in life and difficulty maintaining weight, but do pursue a full workup.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Future-MrsCornell Newbie

Thank you! I have an appointment with a gastroenterologist next week. He is the gastroenterologist that wanted to discuss Fibromyalgia when I did not respond well to the IBS medication Zelnorm, but I'm hoping if I go in there determined to get this fixed and not be a push over when he suggests that it's the "vapors" then I can finally get the treatment needed. Thanks again!

Link to comment
Share on other sites
Future-MrsCornell Newbie

Thank you all! I have an appointment with a gastroenterologist next week. He is the gastroenterologist that wanted to discuss Fibromyalgia when I did not respond well to the IBS medication Zelnorm, but I'm hoping if I go in there determined to get this fixed and not be a push over when he suggests that it's the "vapors" then I can finally get the treatment needed. Thanks again!

Link to comment
Share on other sites
Ursa Major Collaborator

In case you wonder why the initial post is doubled now, I merged the first post with it's duplicate. Future Mrs. McCornell, when you don't see a topic you started right away, that is because a moderator has to approve and 'pin' it to appear at the front of the appropriate forum first. If you don't see it immediately, please don't just post it a second time, be patient, somebody will see it soon and pin it. You can always find it in 'view new posts', when you click on it, even before it's pinned.

You got good advice here, and I am glad you're seeing a gastroenterologist. You need to insist that he test you for celiac disease as well as everything else. When I was so ill last summer, my doctor had me tested for everything under the sun (everything came back negative), except for celiac disease, because 'I was gaining weight, instead of losing it', so my doctor thought that celiac disease wasn't a possibility. Too bad that she was wrong. We need to be our own advocates here!

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
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    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...