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

Do I Have Celiacs?

curiousifcd

Recommended Posts

curiousifcd Rookie
curiousifcd
Posted

Ok I am new to this site (i have been reading over the posts for a few weeks now, but just registered cuz I need some questions answered). I know you guys see the "Do I Have Celiacs?" a lot...but here's one more. I'm a 19 year old college freshman and I haven't been feeling good and I think it's getting worse. I get incredibly nausous, dizzy, very bad headaches, brain fog, I find it hard to pay attention, my stomach swells out (very embarassing, I'm to the point where I dont wanna wear jeans or anything tight), my stomach gets very cramped up, and I feel very consipated, whereas I usually get woken up in the early morning if its fnally time to go (tho I do go about every day to eveyr other, I just feel the urge to go a lot more) Also I feel very full after eating and my stomach is quite loud (people comment on it). Also Im very gassy and I think my stools are abnormal (white specks throughout it, sometiems blood). Ive questioned if im allergic to nuts or lactose intollerant. I was a vegetarian for a year, up until last month but I started adding meat becasue I thought it was screwing up m y body and making it so I dont heal as quickly- I had a kne injury in September that wont heal, and I have to have surgery in 2 days) My sister has a lot of stoamch probelms (hers are worset han mine) I believe she was diagnosed with celiac disease. but then she was retested and it was negative so she said she has IBS. She has cut out a lot of gluten sources tho, and seems to be doing better (tho sher efuses to ccept it, and sitll eats pizza and such - shes older tho and it doesnt live with me). I went to her dr. and he was very helpful and tested me for celiac disease, anemia, and my live and kidney functions (diabetes runs in the family too). After 2 weeks (the lab took foreve to send it back to them, since I had my blood drawn at school and had it sent back) he called and said everything seemed fine, and it was neative for celiac disease (tho I dont know any of my numbers that people have talked about in posts). I was supposed to go back yesterday, but I dont want to feel like a hypochrondiac, or rack up my moms medical bills. Also, last time I went in there they were like oh you probably dont ave celiac disease, people with celiac disease have diarhea not constipation (is that true?) Anywyas, I cut out the gluten about 2 or 3 weeks before i saw the dr and felt ALOT better (tho I did still have slipups- one caused me to wake up at 3 am to og to the bathroom, adn then I almost got sick and really dizzy and chills- almost had to lay on the floor- thought I had the flu or soemthing, but I really dont think so - my roomis or boyfriend didnt have anything wrong). Now that Im home on spring break, Im feeling pretty crappy. I have rashes and itchness all over my body (my hands are especially bad, and are chapped and red and have lil white bumps). I woke up this mornign and my face was rbight red. Its also on my legs and arms. Ive always had very sensitive skin and have to use special soaps and such, and I thought my skin was getting better but guess not. I even bought baby lotion because i thought it would help, but its getting worse. Ive eben eating pretty gluten free, tho I reelaized since I have been home Ive been eating wheat crackers and cereal and granola (i was a major ceral junkie- especaily since im quite a picky eater and am forced to have a meal plan at school).Is it possible I have jsut a gluten sensitivity or wheat allergy or soemthing? I do feel better when I cut out the gluten. Do they do allergy tests for that? I don't want to osund like a hypochrondiac, but I just want to feel better. Any help or input you could give me is very appreciated!

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

Celiac.com Sponsor (A8-M):


KaitiUSA Enthusiast
KaitiUSA
Posted

No that is not true...many people with celiac have constipation. I didn't get diarrhea with it I got constipation not too bad but just a little. I had major nausea and some other symptoms as well. There are very many symptoms that can come with celiac. Everyone has different ones though. You could have no symptoms and still have it. Some people actually don't even get symptoms. Your sister tested positive for celiac once? If she was diagnosed with celiac disease then diagnosed with IBS then I would tell her to be checked again. Celiac is commonly misdiagnosed for IBS and other stomach problems. You may want to try getting a food intolerance and allergy testing done. You could have gluten intolerance but not celiac. Also you could get a biopsy done or more bloodwork if you think it is celiac. Your doctor doesn't seem to be too knowledgeable in celiac if he/she is telling you its not celiac because you don't have that symptom. I think someone needs to teach that doc about celiac. It has been said there are over 200 symptoms with celiac and one person may only have irritability and diarrhea while someone else may just have nausea and fatigue. It is hard to diagnose because there are so many symptoms that can be involved that resemble other things or even no symptoms at all. Also many doctors don't know much about it and misdiagnose it or miss it altogether. I would get checked for food intolerances and you could even do an enterolab where they test through a stool sample for celiac, malabsorption, senstivities to gluten and anything else you order...it is not accepted by the medical community for diagnosis or anything but I find it to be a very good test to get done. They also can do a gene test. There are also blood tests you can get done for intolerances and allergies that I would recommend if you don't do the enterolab. Good luck with everything and hope you find out what's wrong. Hang in there :D

If that doctor will not listen to you find one who knows something about celiac. If you go to the home page here you will find a link of doctors that are recommended by celiacs in each state. I'm sure there are other ones in your area as well you could also call around and ask if you don't find one on the site. Good luck :D

curiousifcd Rookie
curiousifcd
Posted
  • Author

Hey Thanks for replying! Right now I think I'm just goign to eat gluten-free for a while, becuase it diffently seems to be helping, and I didnt eat a lot of gluten before (tho gluten is in some weird sources!) so its not incredibly hard..tho I do find it hard to eat completely gluten-free since the dr said it was negative..im just gonna assume im gluten or wheat sensitive. Even tho I heard that messes up tests..tho Id rather feel better than be confirmed or whatever..tho I think I might look into an allergy test. After reading through the message boards it seems like a lot of people have never heard of celiacs, and a lot of dr.'s are unfamiliar with it too..does it make hard trying to explain that your celiac? How many dr's did u have to go thorugh? Just curious- Thanks!

KaitiUSA Enthusiast
KaitiUSA
Posted

I went through 3 doctors before I found a doctor who mentioned celiac. I had no clue what it was but I had obvious symptoms of it...nausea, weight loss, fatigue, constipation, and anxiety were the main ones. I still go to that doctor of course and also have an awesome GI doctor who is also very knowledgeable in celiac. They thing is it was rare when most of these doctors were in medical school and therefore they did not get proper training of it and don't really know a lot about it. Now it is starting to get more common and hopefully the doctors will start learning more about it and catching it. If you feel better off of gluten listen to your body thats the best thing to do.

The enterolab test does not require you to eat gluten again unless it has been more then 1-2 years since you have had what they are testing for. You can find out more information about that on the site under FAQ on Open Original Shared Link

They can still get positive results or test for sensitivities and so forth which may be helpful to know what else if anything you may be sensitive too. They also an test for the celiac gene and you can find everything they can test for on there.

Make sure you inform your doctor about celiac though...I wonder how many people who actually do have celiac walk in there and out without an answer. I know when my doctors blew me off as soon as I was diagnosed they got a call saying what I did have and I told them that for a future reference so other people hopefully wouldn't go through the same frustration. The celiac word has really been spreading around...I still get what's that sometimes but I don't have to say it as much now because some people have actually heard of it.

I wouldn't rule out celiac just yet... you have a lot of the symptoms and lactose intolerance does come with it due to damage of the villi...once gluten-free that usually gets better.

If you need more info let me know :D Have a great day!

Lesliean Apprentice
Lesliean
Posted

Temporary lactose intolerance can go along with celiac so you might want to monitor how you feel an hour or two after eating dairy. I've read a lot of medical articles that say the false negative rate for the blood tests for celiac are high. I don't consider a negaive blood work to be the final word. I went through 6 doctors to get some help, and 4 years.

Archived

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

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


  • Member Statistics

    • Total Members
      131,552
    • Most Online (within 30 mins)
      7,748
    judytay080
    Newest Member
    judytay080
    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.