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

Frustrated!

bazil323

Recommended Posts

bazil323 Newbie
bazil323
Posted

Okay, I've been having trouble with health, well, all my life I guess. I have had a diagnosis of asthma since I was a baby. Not surprising since my dad, brothers, and many, many other relatives also have this. I also have ichthyosis (aka fish skin syndrome--how special), which is a skin condition where my skin looks dry and flaky all the time. I have multiple environmental allergies to things like molds, pollens, cat dander, etc. Thankfully, I have no drug or food allergies that I am aware of.

Anyway, I have always known that my grandma has celiac disease, but I never really looked into what it was. I didn't really think about it being genetic or anything. It was just "grandma can't have gluten." Now that I've gotten older, I realize that it may run in my family. My aunt and her daughter have it, and my mom suspects that she and my sister have it. Btw, all these relative are on the same side of the family. With this history and some convincing from my mom, I decided to consider whether or not I may have celiac disease too.

My symptoms were mainly that I have frequent diarrhea. Occasionally, I will get somewhat constipated, but that is fairly infrequent. This diarrhea is characterized by having a sudden urge to go followed by 1 or 2 liquid or soft stools. Then I'm fine. Sometimes I will have a "burbley" belly beforehand as well.

After looking into the symptoms of celiac disease, I think that some other things I thought were unrelated may also be symptoms of celiac. Such as my frequent, okay daily, headaches. Now that I have confirmed that I do not, indeed, have chronic sinusitis (went to a specialist and had 2 CTs in 2 months as well as over a month of antibiotics), I'm looking at other possibilities.

Given the varied nature of celiac disease, I can't help but think that so many of my digestive problems and perhaps the severity of my environmental allergies and asthma may be linked. Now that I realize that I have several family members with celiac disease, I think that I really should get checked out. I know that I should, but I just hesitate to bring this up out of the blue to my doc. He's been great, but I've only been going to him for about 2 years. I just want to be as prepared as I can be.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted
Okay, I've been having trouble with health, well, all my life I guess. I have had a diagnosis of asthma since I was a baby. Not surprising since my dad, brothers, and many, many other relatives also have this. I also have ichthyosis (aka fish skin syndrome--how special), which is a skin condition where my skin looks dry and flaky all the time. I have multiple environmental allergies to things like molds, pollens, cat dander, etc. Thankfully, I have no drug or food allergies that I am aware of.

Anyway, I have always known that my grandma has celiac disease, but I never really looked into what it was. I didn't really think about it being genetic or anything. It was just "grandma can't have gluten." Now that I've gotten older, I realize that it may run in my family. My aunt and her daughter have it, and my mom suspects that she and my sister have it. Btw, all these relative are on the same side of the family. With this history and some convincing from my mom, I decided to consider whether or not I may have celiac disease too.

My symptoms were mainly that I have frequent diarrhea. Occasionally, I will get somewhat constipated, but that is fairly infrequent. This diarrhea is characterized by having a sudden urge to go followed by 1 or 2 liquid or soft stools. Then I'm fine. Sometimes I will have a "burbley" belly beforehand as well.

After looking into the symptoms of celiac disease, I think that some other things I thought were unrelated may also be symptoms of celiac. Such as my frequent, okay daily, headaches. Now that I have confirmed that I do not, indeed, have chronic sinusitis (went to a specialist and had 2 CTs in 2 months as well as over a month of antibiotics), I'm looking at other possibilities.

Given the varied nature of celiac disease, I can't help but think that so many of my digestive problems and perhaps the severity of my environmental allergies and asthma may be linked. Now that I realize that I have several family members with celiac disease, I think that I really should get checked out. I know that I should, but I just hesitate to bring this up out of the blue to my doc. He's been great, but I've only been going to him for about 2 years. I just want to be as prepared as I can be.

Hi, and welcome to the forum.

I think it is a good idea that you should be checked for celiac. In order to overcome possible doctor resistance, I would make out a list/family tree of all the members of your family who have celiac. Then make out a list in bullet form of all and any symptoms you have that are consistent with celiac disease and the the other possible diagnoses that have been ruled out by testing and then simply request him straight up to run the celiac panel on you (all five tests). If he thinks your symptom are not "bad enough" tell him you do not wish to wait until you develop serious problems before finding out they could have been prevented. And I am sure you have read up on what they are--anything from diabetes to hypothyroidism to bowel cancer to rheumatoid arthritis to mulltiple sclerosis. You would not want any of these. Depending on his familiarity with celiac disease you may or not meet with any resistance.

Good luck. and let us know how it goes.

bazil323 Newbie
bazil323
Posted
  • Author

Thanks! Any good websites with a comprehensive list of symptoms that you know of? I've done a lot of reading on it, and at one time, I did actually write out what I had for symptoms and who was in my family with it but lost it. I'd like to reread some of this stuff so I can be better prepared. The visit with the specialist about my possible sinusitis was so nervewracking because he took it in a different direction (everyone thought I had chronic sinusis, but the specialist actually read the CT and said no. Very nice, but surprised me). I want to have all my bases covered to prevent any hysterics on my part, lol. I tend to get really nervous and tearful when I have to bring up something that I have no idea what I'm going to have to do to fix.

LDJofDenver Apprentice
LDJofDenver
Posted
Thanks! Any good websites with a comprehensive list of symptoms that you know of? I've done a lot of reading on it, and at one time, I did actually write out what I had for symptoms and who was in my family with it but lost it. I'd like to reread some of this stuff so I can be better prepared. The visit with the specialist about my possible sinusitis was so nervewracking because he took it in a different direction (everyone thought I had chronic sinusis, but the specialist actually read the CT and said no. Very nice, but surprised me). I want to have all my bases covered to prevent any hysterics on my part, lol. I tend to get really nervous and tearful when I have to bring up something that I have no idea what I'm going to have to do to fix.

Here are a couple of links to sites listing "usual" symptoms:

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

It's too bad we have present a case and prove to our doctor that it would be smart to test us for something, isn't it? I had the same experience, even though my adult son had been diagnosed with it about 11 yrs ago! Once I got to the G.I. doc it was a whole different level of knowledge (within my medical system), but getting through that first line (with my primary care doc) was ridiculous. I actually had to change doctors to finally get one to listen and do the test. And good thing I did because my blood work was positive for it, and it was further confirmed by endoscopy (small bowel biopsy).

Be persistent. It's your health.

Archived

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

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


  • Member Statistics

    • Total Members
      131,984
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    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.