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

New Here!

pink dreams

Recommended Posts

pink dreams Newbie
pink dreams
Posted

Hello everyone! My name is Shannon. I am 21 years old and from Michigan. I tested positive for Celiac Disease in 2002, but just found out about it. I got a copy of my medical records recently and found the test results. I have been suffering for years, not knowing what's wrong. I've been to hundreds of doctors. I have extremely severe daily headaches, fatigue, stomach pains, nausea, diarrhea, flu-like aches/pains, and many other symptoms. I am so glad to have found this message board for support. I don't really know where to go from here. I would like to get the blood test done again, but where do I start? Should I see my primary care doctor and go from there? Input would be appreciated!

Shannon

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

Celiac.com Sponsor (A8-M):


Guest j_mommy
Guest j_mommy
Posted

Hi and welcome!!!!

I would start at your primary...most insurance require a referral to a GI. So I would go in and ask for the blood tests or a referral. My Dr. sent me right to the GI and they did the blood work and Biopsy!

You'll find lots of great info on here! It was a life saver for me!

I recommend two books(I'm a reader! :D )

1. Living Gluten Free for Dummies by Dana Korn

2 Celiac Disease: A Hidden Epidemic by Dr. Peter Green

*you can buy both together on amazon .com for about $30!

Good Luck!

Murph Newbie
Murph
Posted

I don't get it - if u tested positive before, why do it again? Celiac doesn't go away like an infection or virus.

little d Enthusiast
little d
Posted

pink dreams

Welcome you must love pink any way what I don't understand is why didn't you doctor tell you your results to begin with. Man just think if that happens a lot are doctors just tring to make a $buck$ by not telling someone to begin with that they are positive for something. OBGYN's let you know when you are defiantly preganate, If you have a TB the community has to know about, AIDS/HIV, So I don't get it that if you have celiac disease don't you have a right to know about it. It is your health that the Doctor is playing with, regardless of what he thinks is not important. When my GI told me that he would WANT me to have IBS because you can control it with drugs, all I could think of was ya you want me to have IBS so you can maybe try some new kind of medicine on me that just might not work in the first place and get $money$ for it, when all i may need is a new diet and some vitamin supplements.

Ok Im done ranting

Nice to have you here, we don't alway rant on here we also learn too.

Donna

grey Explorer
grey
Posted

What a shock! I really don't understand doctors. Pink dreams, did this happen in a college health center, by any chance? Or through a referral?

When I was in grad school, I was diagnosed with migraines by a neurologist; nobody told me, nor did they treat them. It wasn't til I got a real doctor several years later and I was having a headache/neck pain that day did I find out that it could be treated at all, not just endured... When I think about the years without medication - without triptans, etc.- and all that pain, it makes me so angry. :angry: My dissertation would have done so much faster ;) They're still dreadful, but ...

It's especially bad with things like celiac - the majority of people here who have it waited years for a diagnosis that they should have had in weeks or months. And you had it!!

I would suggest going to your PCPhys., and talking to them about next steps. Did you have a biopsy before? How's your health now? I'm newly diagnosed and that's the step I'm stuck in now - trying to find out where I stand in terms of vitamin & mineral definciencies and learning how to eat.

My sympathies. This sucks!!

jknnej Collaborator
jknnej
Posted

You may as well get a blood test done again-but make sure you are eating gluten. Don't go off of it before the test or the results will be incorrect. Your symptoms certainly fit, though.

See your doctor and if he/she does confirm it, we are all here to help you get used to your new lifestyle-new and improved, that is!

pedro Explorer
pedro
Posted

Hi Shannon, and welcome

Does your preveious blood work showed celiac?

The doctor never told you the results, and what do you hope to find from the repeating of the test.

You will find lots of answers to your questions here.

Take care, and best regards to you.

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

Celiac.com Sponsor (A8-M):


pink dreams Newbie
pink dreams
Posted
  • Author

Thank you all for your help and advice!

I wanted to get tested again because my first test was done in 2002 and they never told me about it, so I thought that perhaps there was some mistake? Right now the doctors feel that I have a rare cancer called Pheochromocytoma, but they can't find the tumors. Then I found out about testing positive for Celiac and the symptoms are the same, so I am just curious to know if it is really Celiac or not.

little d & gray, this actually happened through my primary care doctor at the time. I have been ill for so long and they couldn't figure out what's wrong with me. So, they finally tested me for Celiac and two weeks later they call me and tell me everything is "normal." Fast forward to five years later and I get a copy of my medical records and find out it was NOT normal. It's even written on the paper by the doctor, "Strong positive for Celiac." I've never had a biopsy -- just the blood work. I kind of forgot about Celiac in 2002 and researched other conditions that would fit my symptoms. Over the years, things have just been getting wose and right now I am too ill to do anything. I am in bed most of the time. And now that I think about it, everything I eat has gluten in it. So, I definitely think it is a possibility.

I'm also wondering, is sweating a symptom? I will just break out into a sweat for no reason.

Thanks again for all of your help!

Shannon

aikiducky Apprentice
aikiducky
Posted

Could you post the exact test results? Which tests did they run at the time? And why Oh why didn't anyone send you to a GI doc for a biopsy at the time?!? I mean, they find out you have a serious health problem but never even mention it, let alone tell you that it's controllable by diet? Sheesh.

OK, if you are still eating gluten, you can request another blood test and have a biopsy of your small intestine done to make sure, but do it as soon as you can, because if you already had positive blood work in 2002 I'm worried that you shouldn't keep on eating gluten too much longer and damaging your intestines.

Pauliina

Nancym Enthusiast
Nancym
Posted

Wow! I'd consider suing them for withholding that information from you. I'm not suit happy but this is egregious! 5 years of suffering because they didn't tell you.

pedro Explorer
pedro
Posted

Hi.

Please the sooner you find out the better. If I was you, and you already have proof about Celiac. I would start the gluten free diet.

I tell you some doctors don't deserve to be doctors.

Please take care.

pink dreams Newbie
pink dreams
Posted
  • Author

aikiducky -- The test results in 2002 said this: Gliadin AB (IGG) was high. Normal was under 30 and my result was 44. That was the only abnormal thing as far as I could tell. At the bottom of the page it said, "Notify mother of Celiac Disease" but we were never notified. Could there be a lot of damage to my intestines? I had no idea. I'm still learning about Celiac. I have been spending so much time researching Pheochromocytoma, since that's what the doctors thought I have. I'm not sure anymore. The symptoms of both diseases are very similar and my test results for each one came out positive. (For Pheochromocytoma, my dopamine levels were highly elevated which the doctors suspect could mean a dopamine secreting tumor). It could be a mess if I had BOTH! It would be absolutely wonderful though that when I start the gluten-free diet, I start to feel better. It's so hard to live with these headaches and all of the other uncomfortable symptoms. I always worry when I eat because I know I'm going to get sick afterwards.

Nancym -- I have had horrible bad luck with doctors, it seems. My health has been declining since I was about 11 years old and they just ignore me. It started to get serious when I could hardly get out of bed and I'm bleeding from both ends. It's like you have to have actual serious symptoms that the doctors can SEE for them to believe you. Screaming in pain from an awful headache apparently isn't enough.

Pedro -- My primary care doctor is in the office on Monday, so I'm going to give her a call about the test. Once I have that done, I am going to start a gluten free diet. It's amazing how gluten seems to be in everything. You know, I even found it in the shampoo I use!

Thank you all so much for your kindness and information. I would be completely lost right now if it wasn't for this message board!

Shannon

Gonbad Newbie
Gonbad
Posted
aikiducky -- The test results in 2002 said this: Gliadin AB (IGG) was high. Normal was under 30 and my result was 44. That was the only abnormal thing as far as I could tell. At the bottom of the page it said, "Notify mother of Celiac Disease" but we were never notified. Could there be a lot of damage to my intestines? I had no idea.

I would get into a GI immediately. You could have developed refractive sprue which can be very serious and require more dramatic treatment than just going gluten-free.

The very next thing I would do is get a very good personal injury attorney and sue the son of a jerk that didn't relay the results and provide guidance to effective treatments. This is the definition of Malpractice.

aikiducky Apprentice
aikiducky
Posted

Elevated Igg alone is by a lot of doctors not considered strong enough evidence of celiac, which may explain why it wasn't investigated further. I think anybody with elevated anti-gliadin Igg would be wise to at least try the gluten free diet though (just my opinion). And I do think that it warrants further testing, I really do think they were negligent not to do that back in 2002.

I googled dopamine levels and celiac and quickly found this:

https://www.celiac.com/st_prod.html?p_prodid=119

I'm glad you're going to ask for the tests and that you're planning to try the diet. Please be aware that if you want to have a biopsy taken from your small intestine (the official way to confirm diagnosis) you should wait until that is done before going gluten free, as it will be more difficult to interpret the results from the biopsy if your intestine is beginning to heal.

I really hope for you that this is the answer, the diet takes some work in the beginning but as chronic diseases go, one that can be controlled by diet isn't too bad, right? :)

Pauliina

pink dreams Newbie
pink dreams
Posted
  • Author

Gonbad -- I had no idea it could be that serious. I know that my symptoms are definitely serious, but to think that my intestines could be damaged that seriously is scary. Especially when it could have been prevented by just telling me about it (the doctor). I have been thinking about sueing for some time. I've been so sick and been to so many different doctors and none of them tell me what's wrong or what they think. One doctor had the results of my Celiac blood test and never told me. She also never told me how they suspected Pheochromocytoma at age 11. It took me 10 years of research to finally figure that one out.

Aikiducky -- I didn't know enough about the tests to understand them, aside from the "abnormal" and "normal" part. Thank you for the article on dopamine levels. That is very interesting. It might turn out to just be Celiac after all. I'm definitely going to look into further testing. The diet does sound hard, but if it will make me feel better, then it's worth it!

Shannon

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.