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

Does My Bloodwork Say Celiac? I Feel Horrible. :(

FlourGirl23

Recommended Posts

FlourGirl23 Newbie
FlourGirl23
Posted

Hi, everyone. I am a 32 year old female who has struggled with IBS (or I thought so) since I was 10 years old. It came and went sometimes but never truly went away (just lots of trips to the bathroom).

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

Then last year, I had more bloodwork done. I have a different doctor now. My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

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

Celiac.com Sponsor (A8-M):


lizard00 Enthusiast
lizard00
Posted

Hi and welcome to the forum! :)

My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This looks like the test to see your total IgA serum, which basically is checking to see if you make enough or are deficient. Your number came back just within range, so you are technically not deficient, but you are on the very low side of normal. This could have affected the results of the tTG test, making it look negative.

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

WHAT AN IDIOT! :angry: (sorry.... couldn't contain myself.... :lol: )

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

Those are certainly symptoms of celiac, from the physical symptoms to the vitamin deficiencies. I hope you get somewhere with the doctor, as it does sound like you may be looking in the right place. Maybe this time around the doctor will be a little more up to date with current research. Keep us posted!

ang1e0251 Contributor
ang1e0251
Posted

Is there any special reason why you need a dr's diagnosis? If you don't get anywhere again, why not just go on the gluten free diet? You don't need a diagnosis to do it and it is healthy to try. Your doctors obviuosly have had years to treat you and have done nothing for you. Maybe it's time to take your diet in your own hands.

This is your own very personal desicion. If you want further testing, that is OK. Please keep us informed and continue to ask anything you wish.

homemaker Enthusiast
homemaker
Posted
Hi, everyone. I am a 32 year old female who has struggled with IBS (or I thought so) since I was 10 years old. It came and went sometimes but never truly went away (just lots of trips to the bathroom).

In 2003, my doctor at the time did bloodwork, called me and said "you are borderline for celiac". I went to a gastro doc so who said "You are not skinny (I'm 50 lbs overweight), not Irish... it's not celiac, it's IBS". I went home and took Immodium here and there. I repeated the test 2 years later with bloodwork, it was fine.

Then last year, I had more bloodwork done. I have a different doctor now. My Immunoglobulin A (without Gliadin) was 83 with a range of 81-463. The Tissue Transglutaminase Antibody, IGA was 3 ( <5 negative). So only 1 test was slightly positive. My doctor couldn't provide any info on that one test and how important it was.

This year, my joint pain- muscle aches, headaches have been horrible. I feel like I have the flu. Sometimes it's worse at night and in the morning. I've been tested for RA, Lyme.... everything's good. My DHEA-S is high (from the pancreas) nobody knows (had recent ultrasounds) and my B-12 was low as well as D-3. B-12 was 224.

Does this sound like celiac? I have an appt. Monday but it's with a different gastro doc at the same practice of "not skinny and irish".

Any advice is appreciated! I feel lost....

I cannot believe that Doctor said "not skinny and Irish" Grrr That is so untrue....One can be normal weight or overweight and still have celiac. Also you don't have to be Irish... What Old School Thinking!

I also tested negative but went gluten free anyway...I had too strong of a family history, I did not want to take a chance.

I went Gluten Free 5 days ago...and I am feeling better every day!

FlourGirl23 Newbie
FlourGirl23
Posted
  • Author
Is there any special reason why you need a dr's diagnosis? If you don't get anywhere again, why not just go on the gluten free diet? You don't need a diagnosis to do it and it is healthy to try. Your doctors obviuosly have had years to treat you and have done nothing for you. Maybe it's time to take your diet in your own hands.

This is your own very personal desicion. If you want further testing, that is OK. Please keep us informed and continue to ask anything you wish.

I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means. Doctors seem to think my bloodwork doesn't count which is why I am asking here.

ravenwoodglass Mentor
ravenwoodglass
Posted
I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means. Doctors seem to think my bloodwork doesn't count which is why I am asking here.

Your deficiencies as well as the positive blood test make it very likely you are one of us. If you decide to go with an endoscopy keep eating gluten until that is done then immediately upon leaving the office go gluten free. Your body will likely give you your answer before you even get the test results. There are high rates of false negatives with both blood and biopsy so you should give the diet a good shot even if they are negative. The trade off for finding alternative foods for what you are now eating is well worth it for pain free energetic days and a much longer and healthier life. It is hard at first but the diet isn't as bad as a lot of doctors will make you think it is.

mushroom Proficient
mushroom
Posted
I would go gluten-free if I was celiac but not if I wasn't. I'd like to continue eating wheat if I can. However, if it's the root of all my issues, then I would do it by all means.

Many people who are not diagnosed celiacs are gluten intolerant, to the same extent that those with celiac are, and suffer many/most of the same consequences if they continue to eat gluten.

It may be that the only way you can find out for sure if gluten is a problem for you is to discontinue eating it. If you felt better not eating gluten, surely you would continue not eating it??? The diagnosis is not the driver here, but what makes you feel better and stop harming yourself with gluten. So I agree you should give the diet a try no matter the diagnosis. And that would need to be for a good two-three months because sometimes it takes a while for the full benefits to start kicking in. I have no diagnosis myself but would never knowingly eat gluten again.

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

Celiac.com Sponsor (A8-M):


txplowgirl Enthusiast
txplowgirl
Posted

Flourgirl,

I am or I should say I WAS 75 lbs overweight. I had your symptoms plus manny more. I have been in pain and just downright miserable since I was 7 years old. Dr's all told me it was IBS, and/or it's all in my head. Didn't conform to the dr's point of view for celiac. I also have fibromyalgia and rhuematoid arthritis.

I said to heck with them and went gluten free anyway. Best thing I ever done. My fibromyalgia, and Rheumatoid arthritis seems to have gone into remission. Have been gluten free since April. Stomach issues have gone away unless glutened, Anxiety and Depression have also gone away also unless glutened.

Best thing about this is a big bonus. I have lost 30 lbs without even trying. I think part of that though is due to being super sensitive to gluten free processed foods. They gluten me so I can't eat those. Also found out I had other food intolerances as well, You might have them also.

I was desperate to find something, anything to stop the pain and tummy issues. If you are at that point then going gluten free is a no brainer, in my opinion that is. I guarantee that 2 months from now you will be at that point of saying no gluten for me ever no matter what.

I hope you get to feeling better soon.

Vicky

Archived

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

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


  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748
    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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.