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How Long Is To Long To Go Undiagnosed?

KnightRobby

By KnightRobby
in Coping with Celiac Disease

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KnightRobby Enthusiast
KnightRobby
Posted

I have gone undiagnosed for the past 14 years. It started out with a hospital visit with blood work and MRI's and even a spinal tap all negative in April 2000. This concluded to the minds of the doctors that I had mental problems. A straight-A student, perfect behavioral record in school, and no one - except for my family - believed me. It still devastates me to this day because I have lost so, so much from this. I only found out recently and now have proof of heart problems, dislocated jaw disc, and now the cause of it all: Celiac. I have been asked by many doctors if I have ever considered suing (I won't, but it's tempting!).

Anyway, I have yet to see a GI doctor. I am definitely looking into stomach problems, including possible cancer at the moment. The good news is that I don't have many of the symptoms, but it appears you don't need much. I recently went Gluten Free for the past weekend and noticed mild improvement, which I don't believe is normal for stomach cancer. I never jump to conclusions - its just there is SO much to do. I have so many doctors to see and so many tests to run still. Then I have to figure out this new diet plan. And of course, there's my severe chronic pain I have to get under control. And heart problems to boot. And then there's other things to do.

All of which I think have been caused by this Celiac Disease. How in the world did the FDA screw up this royally? It's unacceptable and in my opinion, they should be held accountable. What kills me is this crap is being shipped over seas and introduced into more rural communities, where there are NO doctors. In 1999, when I became ill, there were no Gluten Free labels. To make matters worse, Gluten goes by literally 150-200 different ingredient names. How was I suppose to know? Not one doctor mentioned the word "Celiac."

Well, I was wondering since I have been undiagnosed for this long what extra testing (if any) I might need? My twin brother Ryan, who isn't sick but might be developing Celiac, isn't happy with my progress. He gets so down seeing me like this. Basically, we are very close - heck, he's my best friend too.

Any advice on how to proceed would be appreciated. Would like to get past this for my twin bro at this point. Thanks for your responses.

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NorthernElf Enthusiast
NorthernElf
Posted

My friend I think it is time you decided you are in control. Many celiacs don't have a confirmed diagnosis and at some point it just doesn't matter. What does matter - is being healty.

You think you have celiac, you react to gluten - you are very likely damaging your intestinal tract and your body by continuing to consume it. A weekend test isn't enough. Eliminate it altogether.

How long is too long ? I think you are well beyond that point. If it makes you sick, don't eat it - avoid it like rat poison. Not all damage gluten does to your body is obvious by symptoms...in fact, some celiacs (confirmed by diagnosis) are asymptomatic.

We have all gone through some sort of denial, thinking why shouldn't we be able to eat like everyone else, esp. since we used to. It's really just up to you to make the change, be diligent about what goes into your body.

BTW, never heard of heart issues from gluten...and have heard of joint issues but not jaw dislocation.

kittty Contributor
kittty
Posted

I'm curious about the heart condition too. My doctor sent me to a cardiologist on a whim...well she sent me to just about every -ologist there was just to get me out of her office. He found nothing wrong with my heart...however when I was a teenager I was misdiagnosed with a heart condition. Misdiagnosis of heart conditions is quite common, because heart conditions are so common, and doctors sometimes fall back on that to explain random symptoms. I would recommend ALWAYS getting a second opinion with something like that, if you haven't done already.

I'm not saying that you don't have a heart problem. If you do have celiac you could have developed heart issues completely independently. I'm just really serious about people, especially younger people, double-checking the diagnosis because of my own nightmare. I was misdiagnosed with left ventricular hypertrophy by an idiot doctor who shouldn't even be practicing medicine, and the second opinion revealed there was nothing wrong with my heart at all. It was healthier than most.

mushroom Proficient
mushroom
Posted

Hello, and welcome.

Unfortunately, failure to diagnose early is all too common in celiac. Some of us don't get a formal diagnosis at all, we just diagnose ourselves because we seem to be the only people capable of recognizing, finally, what is happening to our bodies. I am so sorry that this has happened to you to.

To answer your questions, there is a lot of anecdotal evidence about a relationship between TMJ problems and celiac, but no scientific proof. TMJ is often caused by stress and grinding teeth, and certainly what we go through is enough to make us do that!

I do have a heart problem (atrial fibrillation, mediated by the vagus nerve, in an otherwise totally healthy heart) which I can trace in a direct line back to food reactions. What kind of heart condition have you been diagnosed with?

We are finally getting some doctors who are familiar with celiac disease, and the average time to diagnosis is going down and according to the University of Chicago Celiac Center is now four years, which is much better than the lifetimes (30-40 years) some of us have experienced. Yes, it can leave you angry and bitter that you have lost a good chunk of your life to undiagnosed pain and suffering, but I believe you are better served in concentrating on making yourself healthy and making up for lost time in the rest of your life. :) than harboring and pursuing grudges against those who failed you.

nvsmom Community Regular
nvsmom
Posted

I'm sorry you've had such a tough go. :(

I understand your anger and frustration at losing so much of your youth to celiac. I was diagnosed at age 38, and it was only because I stumbled across some information while looking into a health complaint for my son. I took a home Biocard test (for ttg IgA) and it was positive so I took it into my doctor who confirmed it. I was pretty bitter because I've had stomach issues as a baby and child, and the doctors completely dismissed it. I remember being told , "she is one of those people who gets stomachaches after she eats".... Yah well, 30 years later I was still getting stomachaches.

Going undiagnosed is incredibly common.

And yes, it unfortunately can lead to other problems. I ended up critically ill with ITP (idiopathic [unknown cause] autoimmune attack on platelets) as a teen and had to have my spleen out. I also ended up with thyroid problems. I don't know for certain that celiac caused that but it could have contributed.

JI'm not sure if you've been diagnosed but if you have not just go see your GP and ask for the celiac panel and you could know in a week if you have it. Your results could be compromised if you cut gluten out of your diet before the test so you'll have to continue eating it at fairly high levels until then. Have your vitamin levels checked for deficiencies as low levels can mess with your systems in a major way. You might want to check your thyroid too since misfunctioning thyroid can cause a huge host of problems like fatigue, heart palpitations, and anxiety; TSH and TPO Ab would be a good tests to run.

Good luck to you.

MitziG Enthusiast
MitziG
Posted

We all get your frustration. I was undiagnosed for 30 years. Many here went even longer. The good news is...you will probably heal. It takes time, months, years sometimes...but it gets so much better.

Since you have your diagnosis, it is time to go gluten free for good. Also, request that they test your vit A, D, E, K, B12 and iron/ ferritin. These are typically low in celiacs.

It will get better from here on out.

Adalaide Mentor
Adalaide
Posted

I'm 34 and was diagnosed just before my birthday entirely by accident and happenstance. If it hadn't been for a related medical problem that led to emergency surgery I'd still be suffering with worsening symptoms today wondering what it is making me so sick. I realized after my diagnosis as I looked back that I have been sick with celiac symptoms for literally my entire life.

There are so many things that can be linked to celiac that it would be a little ridiculous to try to cover them all here. If you do a google search though you'll easily find lists and see what fits you and your symptoms and maybe something(s) will jump out at you to be tested for. This is in addition to the basic deficiencies we should all be tested for since we have useless intestines.

I agree that as long as you have a firm celiac diagnosis in hand you need to go gluten free immediately. You can't beat around the bush with it. Admittedly I did take time myself. I wasn't even aware I had had a biopsy done until I got a call with the results. I made an appointment with my doctor which was either 2 or 3 days before my birthday and didn't make any life changes before I saw my doctor. At that point I decided that I another few days wouldn't be life changing and that I emotionally needed those days and that last birthday with gluten to cope. If you need something similar, that's okay. But seriously, a few days tops. Get it out of your system and get gluten free.

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    • knitty kitty
      Outgrow celiac?

      By knitty kitty · Posted

      @Riley., Welcome to the forum, but don't do it!  Don't continue to eat gluten!  The health problems that will come if you continue to eat gluten are not worth it.  Problems may not show up for years, but the constant inflammation and nutritional losses will manifest eventually.  There's many of us oldsters on the forum who wish they'd been diagnosed as early.    Fertility problems, gallbladder removal, diabetes, osteoporosis and mental health challenges are future health issues you are toying with.   To dispel fear, learn more about what you are afraid of.  Be proactive.  Start or join a Celiac group in your area.  Learn about vitamins and nutrition.   Has your mother been checked for Celiac?  It's inherited.  She may be influencing you to eat gluten as a denial of her own symptoms.  Don't let friends and family sway you away from the gluten-free diet.  You know your path.  Stick to it.  Be brave. 
    • knitty kitty
      New Celiac Mama in My 30s

      By knitty kitty · Posted

      @tiffanygosci, Hello.  I apologize for your thread being hijacked.   I recognize your symptoms as being similar to what I experienced, the migraines, food and chemical sensitivities, hives, nausea, the numbness and tingling, joint pain, tummy problems, sleep problems, emotional lability, and the mom brain.  My cycle returned early after I had my son, and I became pregnant again with all my symptoms worsening.  Unfortunately, I lost that baby.  In hindsight, I recognized that I was suffering so much from Thiamine deficiency and other nutritional deficiencies that I was not able to carry it.   Celiac Disease affects the absorption of nutrients from our food.  There's eight B vitamins that must be replenished every day.  Thiamine Vitamin B1 becomes depleted first because it cannot be stored very long, less than two weeks.  Other B vitamins can be stored for two months or so.  But Thiamine can get low enough to produce symptoms in as little as three days.  As the thiamine level gets lower, symptoms worsen.  Early symptoms like fatigue and anxiety are often attributed to life situations, and so frequently go unrecognized by medical professionals who "have a pill for that".   I used to get severe migraines and vomiting after gluten consumption.  Thiamine and the other B vitamins are needed to turn carbohydrates, fats and proteins into fuel for our bodies.  With a large influx of carbohydrates from gluten containing foods, the demand for Thiamine increases greatly.  Available thiamine can be depleted quickly, resulting in suddenly worsening symptoms.  Emotional stress or trauma, physical activity (athletes and laborers) and physiological stresses like pregnancy or injury (even surgery or infection) increase the need for Thiamine and can precipitate a thiamine insufficiency. Pregnancy requires more thiamine, not just for the mother, but for the child as well.  The mother's Thiamine stores are often depleted trying to meet the higher demand of a growing fetus.  Thiamine insufficiency can affect babies in utero and after birth (autism, ADHD).  Having babies close together doesn't allow time for the mother to replenish thiamine stores sufficiently.   Thiamine insufficiency can cause migraines, pins and needles (paresthesia), and gastrointestinal Beriberi (gas, bloating, diarrhea or constipation, back pain).   Thiamine deficiency can cause blurry vision, difficulty focusing, and affect the eyes in other ways.  Thiamine deficiency can damage the optic nerves.  I have permanent vision problems.  High histamine levels can make your brain feel like it's on fire or swelling inside your cranium.  High histamine levels can affect behavior and mood.  Histamine is released by Mast Cells as part of the immune system response to gluten.  Mast Cells need Thiamine to regulate histamine release.  Mast Cells without sufficient thiamine release histamine at the slightest provocation.  This shows up as sensitivities to foods, smelly chemicals, plants, and dust mites.  Thiamine and the other B vitamins are needed to lower histamine levels.  Vitamin D is needed to calm the immune system and to regulate our hormones.  Menstrual irregularities can be caused by low Vitamin D.   Celiac Disease is a disease if Malabsorption of Nutrients.  We must take great care to eat a nutritionally dense diet.  Our bodies cannot make vitamins.  We must get them from what we eat.  Supplementation with essential vitamins and minerals is warranted while we are healing and to ensure we don't become deficient over time.  Our bodies will not function properly without essential vitamins and minerals.  Doctors have swept their importance under the rug in favor of a pill that covers the symptoms but doesn't resolve the underlying issue of malnutrition. 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Are you keeping your babies on a gluten free diet?  This can prevent genetically susceptible children from developing Celiac Disease.   P. S. Interesting Reading  Thiamine deficiency in pregnancy and lactation: implications and present perspectives https://pmc.ncbi.nlm.nih.gov/articles/PMC10158844/ Descriptive spectrum of thiamine deficiency in pregnancy: A potentially preventable condition https://pubmed.ncbi.nlm.nih.gov/37458305/ B vitamins and their combination could reduce migraine headaches: A randomized double-blind controlled trial https://pmc.ncbi.nlm.nih.gov/articles/PMC9860208/
    • trents
      Outgrow celiac?

      By trents · Posted

      @Riley, on this forum we sometimes get reports from people with similar experiences as you. That is, their celiac disease seems to go into remission. Typically, that doesn't last. At age 18 you are at your physical-biological peek in life where your body is stronger than it will ever be and it is able to fight well against many threats and abuses. As Wheatwacked pointed out, absence of symptoms is not always a reliable indicator that no damage is being done to the body. I was one of those "silent" celiacs with no symptoms, or at least very minor symptoms, whose body was being slowly damaged for many years before the damage became pronounced enough to warrant investigation, leading to a diagnosis. By that time I had suffered significant bone demineralization and now I suffer with back and neck problems. Please, if you choose to continue consuming gluten, which I do not recommend, at least get tested regularly so that you won't get caught in the silent celiac trap down the road like I did. You really do not outgrow celiac disease. It is baked into the genes. Once the genes get triggered, as far as we know, they are turned on for good. Social rejection is something most celiacs struggle with. Being compliant with the gluten free diet places restrictions on what we can eat and where we can eat. Our friends usually try to work with us at first but then it gets to be a drag and we begin to get left out. We often lose some friends in the process but we also find out who really are our true friends. I think the hardest hits come at those times when friends spontaneously say, "Hey, let's go get some burgers and fries" and you know you can't safely do that. One way to cope in these situations is to have some ready made gluten-free meals packed in the fridge that you can take with you on the spot and still join them but eat safely. Most "real" friends will get used to this and so will you. Perhaps this little video will be helpful to you.  
    • 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 :,)
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