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

Do I Have Celiac Disease?

Leigh Ann

Recommended Posts

Leigh Ann Rookie
Leigh Ann
Posted

Hello,

I am new to this board, and i hope I have found hope and experience in this forum. I really need support by others with celiac disease. Let Me tell you about me...I am 33 female my digstive history has been as such....

Malrotation of the colon...surgery to remove 9 inches of colon, IBS, GERD, and Hiatus Hernia. I have spent most of my llife on Prilosec or Nexium. I have bee anorexic for no apparent reason in my past and then came out of it. I am always distended after I eate...an I go through periods of symptoms that are unexplainable for years....a friend suggested I share these symptoms with other celiac disease patients to see if anyone experiences the symptoms that I have ongoing and periodically....Help i dunno how to pursue this agressively or anything. I have scheduled an appoinment with my Gastroenterologists for the 31st

My Symptoms (some present all the time others not);

constant diarhea mucus like and fatty- somedays worse than others

bloating and distention-always after I eat and a few hours later

headaches

irritated easily-I am usually so kind

loosing weight with out effort

blister or bumps on skin- year and a half ago it was severe and itchy on my upper arms I have scars today where I would scratch them they itched so much...now I get them only popping up here and there like on my forearms, head, back, and get sores on the corners of my mouth.

I have burning tongue and mouth periodically with no warning

I am TIRED all the time, and weak to want to do much

When I eat macaroni lately I really get so sick...the worst!

there is so much more...but can anyone help? Does this seem like I should demand some sort of test and if so what?

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


jaimek Enthusiast
jaimek
Posted

Leigh Ann- sounds to me like you have all of the classic symptoms of Celiac. I am not even close to being a doctor but I definitely think that you should get a blood test to see if you have Celiac Sprue and then follow up with an endoscopy to make it conclusive. I am 26 and was just recently diagnosed. I did have some of the symptoms that you are experiencing (headaches, irritability, weight loss, hernia, etc.) so I am thinking that a gluten-free diet might be your answer. Hang in there, as soon as you have the tests all you need to do is follow the strict diet and you will be cured of all of those nasty symptoms. Good luck and let me know how the test results come out!!! :D

Link to comment
Share on other sites
Guest jhmom
Guest jhmom
Posted

Hi Leigh Ann, welcome :D

I had a lot of the same symptoms you mentioned before my diagnosis. Since you have not seen a GI doc yet at your first visit you should request him to run a "Celiac Panel". I think there are like 5 tests (not sure) but I do know about the: Tissue Transglutaminase IgA

Antigliadin Antibody Panel Gliadin AB IGG

Gliadin AB IgA

Also I suggest you write down all the symptoms you experience and try to keep a food diary to show him what foods seem to give you a problem.

I hope you feel better soon! :)

Link to comment
Share on other sites
Leigh Ann Rookie
Leigh Ann
  • Author
Posted

Thanks to those who replied...anyone else with advice...and have these symptoms?

I can not wait til my appoinment

Link to comment
Share on other sites
Dwight Senne Rookie
Dwight Senne
Posted

Hi Leigh Ann,

Yes, I agree that you have many of the traditional symptoms of Celiac. I had many of those same symptoms prior to my diagnosis. The key word in that sentence was "had"! :D

Please do not "demand" anything of your doctor! That may put him/her on the defensive and actually be counterproductive to your health. Instead, explain your symptoms and ask if a Celiac Panel blood test is warranted.

If the doctor says any one of your symptoms are not indicative of Celiac, or if you are missing a symptom that is indicative of Celiac, please mention that recent studies indicate there are no absolute symptoms of Celiac Disease. In fact, some recently diagnosed patients show no symptoms at all! The disease was found while looking for something else!

The University of Chicago recently had a free Celiac screening. If I remember correctly, they had several asymptomatic subjects test positive on the Celiac panel! You may want to research this before seeing your doctor, so you actually have some legitimate ammunition.

In all cases, try to be cooperative with your doctor. The fact that you have many of the symptoms does not automatically mean you have the disease. Your doctor is still the authority. Work with him/her to find the root cause. If, after reasonable time and effort, you feel your doctor is not cooperating, by all means, find a new doctor!

Link to comment
Share on other sites
Guest aramgard
Guest aramgard
Posted

Leigh Ann, Try going on www.celiacwalk.org and checking it out. On May 22 there will be a celiac walk, where they will give free blood screening for Celiac disease. If you live close to one of the walks, this may give you an alternative to your own doctor. It costs $18 for the 1k and the blood screening is free. The money raised will go to research on Celiac disease. Prometheus labs do the blood work. I hope this helps. Shirley

Link to comment
Share on other sites
  • 2 weeks later...
wildones Apprentice
wildones
Posted

I have to disagree, slightly with another post about how best to deal with your doctor. I agree you need to have as much information as possible to bring to your doctor. Research and studies in medical journals are generally a MUCH more effective way to approach doctors.

Where I disagree is in asking the doctor if they think a test for celiac disease is warranted. The symptoms you describe DO warrant a blood test. Some doctors will decide within a few seconds (literally) of walking in the room, what is going on with you. Some doctors will dismiss a patient's very valid concerns. If you bring them, in writing, a list of your symptoms and concerns, and research from medical journals (found here possibly) and request bloodwork be done, I think any reasonable doctor would order the tests.

My understanding of the test is that it is CRITICAL to get all 5 screening tests done, in order to get accurate results. If you bring info from one of the labs that does all 5 tests, you will probably get much better response from your doctor. Prometheus labs is one of the labs that does a comprehensive screening panel. It is also VERY important that you remain on a diet that contains gluten before your testing is done, in order to get accurate results.

Link to comment
Share on other sites
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Guest aramgard
Guest aramgard
Posted

Unfortunately I have dealt with doctors for many-many years who do not understand or know about the symptoms of Celiac disease. I always carry a written statement of my symptoms and explain all of the testing that has been done to me before. The doctors I have dealt with are not experts in the symptomotology of Celiac disease nor are most of the willing to study the symptoms to learn. The doctor who diagnosed me was willing to take my word for the fact that I thought it was Celiac and do all of the testing, so I stuck with him, because he believed me. This is a first for me, a doctor who actually believed what I was telling him. He did the blood work which was positive, then sent me to the GI doctor who did the endoscopy and confirmed the diagnosis. He just couldn't believe I had Celiac disease. My symptoms began when I was around 14 with the dermatitis and progressed to the intestinal problems because I was never diagnosed properly. I am now nearly 70 years of age and was diagnosed 3 years ago. This doesn't speak well for our medical professionals. Shirley

Link to comment
Share on other sites
lionphish Newbie
lionphish
Posted

Hi,

I'm 22 and for the last two years have been suffering with digestion problems (like heartburn constipation diahrea etc) and more recently for the last 6 months i've been getting really sick with diahrea, feeling week, constipation, never finishing a bowel mouvement etc Each time I have diahrea I get a skin rash that starts on my hands and ends up everywhere..My skin becomes really red and itchy...it sometimes feels like it's on fire. Now I don't know what's wrong with me. I've been trying to figure out what could be wrong...Gluten, diary, eggs I seems like I can no longer digest anything and I don't know what to do. I'm afraid to go very far from home in case I get sick, I'm afriad I'll be at school by myself and get an "attack" and not be able to get home in time. I stoped eating gluten and it doesn't seem to be helping. I thought I might try eating gluten again to see if I felt worse or not....I just don't know what to do anymore...

Link to comment
Share on other sites
plantime Contributor
plantime
Posted

How long have you been gluten free? Are you sure you're not getting contamination? Sometimes it takes a long time for damage to heal. If you have had diarrhea constantly for 6 months, then you probably have significant damage. If you are not going to the doctor for bloodwork and biopsy, then stay gluten free for at least 6-8 weeks before trying gluten again. You have to give your body time to detoxify, then to heal.

Link to comment
Share on other sites
lionphish Newbie
lionphish
Posted

Thanks...It's just so frustrating when your not sure what the problem is. Every time I eat something I wait and see if I'm going to get a reaction. It's hard to tell what food are hard to digest because in a day you eat more than one thing at a time. I'm a vegetarian and I don't eat gluten and I try to stay away from dairy and eggs. I try to eat healthy and avoid preservative and things like that...It just doesn't leave me with a lot of choices. I need help figuring out what to eat.

Link to comment
Share on other sites

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 Nacina's topic in Related Issues & Disorders
      1

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

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

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

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

      Waiting for urgent referral.

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

      Waiting for urgent referral.

      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...
    5. Moodiefoodie
      - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well. I also...
  • 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

    • Scott Adams
      14 year old with Celiac & EOE still suffering...

      By Scott Adams · Posted

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

      By Nacina · Posted

      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
      Waiting for urgent referral.

      By trents · Posted

      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
      Waiting for urgent referral.

      By Fluka66 · Posted

      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.
    • Moodiefoodie
      Joint swelling when ill even on gluten-free diet

      By Moodiefoodie · Posted

      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...