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

Could I Have Celiac Disease?

mcnabbmcnow

Recommended Posts

mcnabbmcnow Newbie
mcnabbmcnow
Posted

For nearly five years, I have suffered from headaches, lightheadedness, constipation and gas (particularily on the left side of my stomach), belching and bloating, fatigue, and a general achiness pretty much all the time. I've been to neurologists, ear nose and throat doctors, gastrologists, chiropractors, allergist, massage therapists...etc...to some of the best in the country. I can't seem to stay focused on anything and feel bad for my wife and son coping with my problems.

One of the massage therapists mentioned that I could have celiac disease. Do you think with those symptoms it is possible? I am a 32 year old male in Pennsylvania. Anyhow, my massage therapist mentioned this to me, and assuming that I can still eat eggs, meat, veggies, and fruit, this diet seems more doable. I went to the health food store and bought some gluten free products. My questions are this (I haven't had any official tests to see if I have this but suspect it somewhat)

1. If in fact I did have Celiac disease, how long would it take for me to feel a difference if I was on a gluten free diet?

2. If in a 3 month period I cheated once...does that set you all the way back?

Any advice would be appreciated.

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

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted

I would advise you simply to get tested now, before you start the diet. If you are on a gluten-free diet for awhile, testing will not be accurate. Though you can get many different tests done, including biopsies, the least invasive is a blood panel. If you ask your doctor, you can get bloodwork done, which will tell you--this is better because if you just try the diet, it could take only a week, but it might take over a year to feel better from the diet--you just don't know, so if you don't get tested, you might, in a year, wonder if it might just take another month to feel better or if it's something else.

You cannot cheat. Cheating will set you back a great deal. If you've been gluten-free for a year and you accidentally eat gluten, it won't set you back all the way, but it could take weeks or over a month for your intestines to heal. You simply shouldn't do it, because cheating once every three months will continually set you back, making the diet less if at all effective. Additionally, untreated celiac (and if you cheat and aren't trying to be 100% gluten-free, it's untreated) can, in the long term, lead to future complications such as osteoporosis, diabetes, cancer, arthritis, thyroid disorders, malnutrition, anemia, and a multitude of serious problems. It's simply not worth it.

Finally, it's likely that you have celiac. You have the most common symptom, fatigue, in addition to other common symptoms: bloating, gas, belching...migraines can be linked to celiac. Also, 1 in 133 people have celiac, it affects 1% of the population, and yet, is untreated in 97% of the cases, usually because people aren't aware they have it and doctors don't test.

-celiac3270

mcnabbmcnow Newbie
mcnabbmcnow
Posted
  • Author

celiac3270. Thanks! Maybe because I haven't had the symptoms as long as some people, I am not in awful condition...but I am definitely frustrated. Where would I go near Philadelphia to get tested for this, and how complicated is the testing process....I have had colonoscopies and endoscopies and UPPER GI's in the past and found nothing...other than that I have functional dyspepsia. They define that as an irritation in the inner lining of the stomach...but really what it means is this. They acknowledge I have a stomach problem but do not know what it is or what is causing it.

It's not that I intend to cheat on the diet...but I also think it is inevitable at some point that you slip up and eat something you thought had no wheat in it.

ianm Apprentice
ianm
Posted

You sound a lot like I did a year ago although you don't sound like you are in as bad of shape as I was. I was also on the verge of Type II diabetes. I never got tested but from all that I have learned about this disease I am quite confident it is what I have. I can pretty much eat whatever I want as long as it doesn't contain gluten. I only eat meat, fruits and veggies. Corn and wild rice doesn't seem to bother me. I don't eat processed food anymore. I started to feel better about a week after going gluten-free although it was a good two months before I could say I felt healthy. For the first time in 36 years I was able to exercise regularly and find that is critical for me. Every now and then you are going to get nailed with an accidental hit of gluten. I am healthy enough now where it doesn't slow me down too much. I can usually feel it within a few minutes of ingestion and can stop before I eat too much. You've come to the right place, this is a great group.

Ianm

mcnabbmcnow Newbie
mcnabbmcnow
Posted
  • Author

Ian, thanks so much! The inability to exercise is something that is killing me, because I formerly was very athletic, playing tennis in college, and playing in basketball and baseball leagues growing up. I still play church softball. Recently I go to a chiropractor/massage therapist, and I feel better afterwards. However, if I come home and go on the elliptical machine for 7 or 8 minutes, I wake up the next day and I am aching all over...and it is almost like the massage therapy did no good. I basically cannot do any sports due to pulsing headaches and fatigue and achiness. I want to be able to exercise but for those reasons and because I feel nautious, I can't. My body reacts terribly to anything other than church softball, which can barely be called exercise.

I'm not as bad as you but it is perhaps because both my in laws live near me and basically I have a lot of stuff done for me....to make it short, I am financially stable, work at a low pressure job, and really have what many would feel is a nice life...other than I feel like crud all the time. It is tough on my wife who has to deal with my complaints and whining.....I don't even mention how bad I am feeling to her anymore because I figure she is sick of it by now!

ianm Apprentice
ianm
Posted

I can't do any real strenuous exercise. I do a lot of walking and bike riding. Also some weight training, not body building, to keep muscle tone. Working on a six pack but at 37 I'm not so sure that will happen but I can still try. :lol: Running is out because my knees can't seem to hold up too well. I was never able to do much of anything before going gluten-free so what I'm doing now is quite athletic for me.

ianm

celiac3270 Collaborator
celiac3270
Posted

Oh, I see :) -- that's a better mentality--yes, we all make mistakes at some point or get contaminated at a restaurant. Provided that you're not constantly getting contaminated or making mistakes, you should have no long term problems from getting contaminated rarely. Don't be as concerned if you make mistakes in the beginning--those are nearly inevitable.

I know--it's really frustrating. Blood work, though least invasive, is the most likely to find it if you have celiac. Endoscopies can miss celiac, since the intestinal damage could be patchy or only in certain areas.

Keep us posted :)

-celiac3270

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

Celiac.com Sponsor (A8-M):


celiac3270 Collaborator
celiac3270
Posted

Just found out something about antibodies and how often you need to make mistakes to be at risk for problems:

It takes 4-6 weeks for gluten antibodies to go down (that means, you can test a week or two into a gluten-free diet, but not long after. It also means that if you're making one mistake each month, you're at serious risk for the problems of untreated celiac: osteoporosis, cancer, etc. Just thought it would be interesting to share--

Archived

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

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


  • Member Statistics

    • Total Members
      131,549
    • 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.