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

So Here I Am :)

GenaA

Recommended Posts

GenaA Newbie
GenaA
Posted

Well it all started with doing a google search for ( stomach pain, lower back pain and gas) and here I am.  :blink:  I had GBS in Jan of 2010. Did really well for a while and then I became lactose intolerant which happens alot after this surgery.No big deal easy enough. I think I became gluten intolerant at least 2-3 years ago and never realized it until now. I always blamed alot of my symptoms on other things such as IBS, other allergies I have, the weather changes, stress. 

So I started researching the symptoms and wow this explains alot. The stomach pain and bloating, lower back pain which started in Dec and has not stopped.
Being extremely tired moreso then usual.
Depression and anxiety and panic which I am actually on meds for panic that started a couple years ago. Also my concentration level has gotten really bad. Foggy Brain.
Headaches, irritability. Woke up one morning last month with a pounding headache which I usually only get if I have a sinus infection. Also getting just annoying little headaches more often now.
Constipation and diarrhea , foul smelling stools and gas. Thought this could be IBS.
I became lactose intolerant about 4 months after my GBS.
Bone and Joint pain and Osteoporosis.-  Was having some implant surgery done. In taking xrays of my bone in my mouth where the screws are it shows that the bone is going down which means we couldt complete the surgery. My dentist thought I was rejecting the metal  but now I am pretty sure it must be from the this.  
Loss of hair, thought that was from the GBS surgery
I also got terrible Acne in Dec and it still hasn’t totally gone away. Could not figure out what it was coming from as I usually have pretty clear skin.
Itchy skin and dry.
Mouth feeling dry and Urinating alot more.
 

As I think back to these symptoms its been coming on now for a few years. I just always dismissed them for something else. I would from time to time get a week or so of the stomach cramps and lower back pain and just feeling bad in general then it would go away.

Have done all the normal blood work to make sure its nothing else. Blood work was fine. Talked to my dr about doing the blood test for the gluten so doing that on Monday.

So, now I have to learn what not to eat that has gluten in it which is alot of things I love of course or buying gluten free or baking which I am not so into that. LOL Lactose was pretty easy compared to this. LOL However I am thinking well if this is all it is then at least its nothing serious and can be corrected by just a change in diet.  :o 

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

Celiac.com Sponsor (A8-M):


1desperateladysaved Proficient
1desperateladysaved
Posted

Greetings Gena,

 

All of that doesn't sound very fun.  I am glad you are planning to do the tests.  There are about 5 tests on the celiac panel.  I am hoping someone will list them for you.  After that one usually has a endoscopy to look for damage in the small intestine. You seem to have a good attitude starting out.  It sounds like you are ready for anything!  I hope you will get some definitive answers soon!

 

D

GFinDC Veteran
GFinDC
Posted

Hi Gena,

 

Welcome to the forum! :)  The celiac antibodie tests are listed below.  You should have all of them done at once.

 

Be sure to keep eating gluten like regular until all ltesting is complete.  Testing usually starts with a blood draw for antibodie tests and then is followed up with an endoscopy to take biopsy samples from the small intestine.  You shouldn't stop eating gluten until all that testing is done.

 

There is a really wide range of symptoms in celiac disease patients.  your symptoms can easily fit in there.  Gall bladder problems are somewhat common in untreated celiacs also.  I think doctors should automatcilayy test new gall bladder patients for celiac disease, but they don't do that now.

 

Lactose intolerance is another common symptom in celiac disease.  The antibodies attack the villi lining the small intestine and destroy the ability to make lactase, the enzme for digesting lactose.  Sometimes people get the ability to digest lactose back after being gluten-free for a several months.

 

Celiac disease antibodie tests

Anti-Gliadin (AGA) IgA
Anti-Gliadin (AGA) IgG
Anti-Endomysial (EMA) IgA
Anti-Tissue Transglutaminase (tTG) IgA
Deamidated Gliadin Peptide (DGP) IgA and IgG
Total Serum IgA
 

124chicksinger Apprentice
124chicksinger
Posted

Good luck with the testing.  I want to add that I tested negative both in blood and scoping, but I eliminated gluten anyhow.  In 3.5 weeks, I already see a difference in my bathroom habits.  I'm not hungry, am adjusting well to the gluten-free foods, have no cravings, don't feel as if I'm being punished by not being able to eat....whatever has gluten...and I am doing just fine.  You will do fine too.   As written above, continue to eat gluten until you are tested.  However, after the tests, if they turn out negative for celiac, you may wish to eliminate gluten for a period of 6 weeks to see if your symptoms subside.  Mine definitely are responding to a gluten-free menu.  Good luck.

GenaA Newbie
GenaA
Posted
  • Author

Thanks for the welcomes. :)  I am scheduled for a Colonoscopy end of April.  I had my gall bladder removed I guess 20 years ago. 

I have pretty much decided after this blood work to stop gluten anyways no matter what the test results. I am 100% sure myself that this is what it is. 

I am healthy otherwise, never having many health issues so this kinda explains alot. 

nvsmom Community Regular
nvsmom
Posted

Perhaps check and see if you can have an endoscopic biopsy (to check for celiac disease) at the same time as your colonoscopy? Kill two birds with one stone. ;)

Make sure you continue to eat gluten until all testing is done.

Best wishes.

Archived

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

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


  • Member Statistics

    • Total Members
      131,554
    • Most Online (within 30 mins)
      7,748
    Becky 0163
    Newest Member
    Becky 0163
    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.