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

Diagnoising Yourself

Danhunter

By Danhunter
in Doctors

Recommended Posts

Danhunter Newbie
Danhunter
Posted

Well I finally managed to get some comfort in the fact that I am NOT ALONE in my frustrations with my doctor. I was thoroughly read threw all the post in relation to the question, and found many people needing confirmation of the disease which they themselves know to be true. Many say they go back onto wheat, barley and Rye and experience horrible symptoms much worse than before as their bodies are fighting off the toxic invasion much quicker, many cannot bare doing it more than a week and ask the doctor to take a blood sample as quickly as possible.

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

Celiac.com Sponsor (A8-M):


kittty Contributor
kittty
Posted

Definitely get a new doctor. I am self-diagnosed and went gluten free, but followed up with a doctor after a few months. She was very understanding, and recommended the blood test even though we knew it would probably come back negative. She didn't know much about celiac at first but she RESEARCHED for me, and even called a GE to talk about the blood test results and ask how quickly the antibodies disappear after going gluten free. She said it was pointless to go back on gluten just to get a diagnosis when we can observe through diet what the problem is. She diagnosed me as "celiac presumptive" and that was good enough for me.

After ranting about doctors for ages myself, I'm actually pleased that my doctor has supported me through this. She wasn't able to put a finger on the problem herself, but she sure did listen to me when I came to her with a suspicion of celiac. And she was EXCITED for me, because she knew that I'd been dealing with a variety of different problems for many years.

You say that you're still having problems, but they have gotten any better. Some people take much much longer to heal, so you're on the path to recovery but aren't there yet. Make sure you're eating good food, and not just high calories to gain weight. You probably need to play catch-up with your vitamins and minerals.

ravenwoodglass Mentor
ravenwoodglass
Posted

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

intolerant baker Newbie
intolerant baker
Posted

Welcome to the board. If you are already gluten free or gluten light testing for celiac will be a false negative. What are you typically eating? Going with whole unprocessed foods is the best for us at first. Are you eating many gluten free replacement foods? We can have problems with some of those especially if they contain Codex Wheat Starch (some consider it to be gluten free but many of us will react to it) Soy and dairy are also common for us to have problems with so you may want to avoid those for now.

Has your doctor tested your levels for vitamins and minerals? It can take some time for us to heal and be able to absorb nutrients properly so do have the doctor check. If for some reason the doctor won't then do supplement especially with the B vitamins. Don't oversupplement with iron unless you know you need to as too much can be toxic.

Do read the Celiac 101 thread as it has a lot of useful information. We have to be careful not only about what we eat but also how it is prepared.

I hope you feeling better soon but it does take time.

I went gluten free before my testing (thinking I had systemic candida for years) so I also had a negative blood result. All my other labs and the past six years of "unrelated" health issues has my doctor also recommending a gluten free lifestyle. My question is whether I should ask for a referral to a nutritionist or RD? I have had B12 anemia and Vit D deficiency for at least two years. I am having difficulty digesting still despite probiotics and digestive enzymes. I have not seen a gastro, my primary has really been incredible and I know she does not think I am crazy or a hypochondriac. Do most folks with the malabsorption issues go to a nutritionist?

Archived

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

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


  • Member Statistics

    • Total Members
      131,983
    • Most Online (within 30 mins)
      7,748
    CRae
    Newest Member
    CRae
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.