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

Hi, I'm New.

tisci02

Recommended Posts

tisci02 Newbie
tisci02
Posted

Hi everyone. I'm 25/f/MA. I went to my doc last week & explained that I thought I was gluten sensitive. I've had bad stomach issues for over 6 years now & was told it was most likely IBS & lactose intolerance. Even w/avoiding milk & oily foods (which I thought caused the diahrrea) I was still getting sick. I was diagnosed at 9 w/juevenile rheumatiod arthritis & hypothyroidism, which I know are common w/people w/Celiac.

The doc is skeptical of me having Celiac because I'm not deathly ill, but ordered the blood test anyways. She told me to go gluten free for a few weeks & if the blood test comes back negative, to then eat some gluten & see how it effects me. I'm still trying to get used to paying super close attention to what I eat & today I accidentally ate some gluten. Within a few hours I was suffering from bad cramps, gas & diahrrea, along w/all around feeling drained. I ate around 1:20pm & it's now 10:30 pm & I'm so uncomfortable I'm just laying in bed. I can't fall asleep & it hurts to be in a sitting position. Is it safe to say that even if my blood test comes back negative, I definitely have some kind of issue w/gluten?

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

Celiac.com Sponsor (A8-M):


Wolicki Enthusiast
Wolicki
Posted
Hi everyone. I'm 25/f/MA. I went to my doc last week & explained that I thought I was gluten sensitive. I've had bad stomach issues for over 6 years now & was told it was most likely IBS & lactose intolerance. Even w/avoiding milk & oily foods (which I thought caused the diahrrea) I was still getting sick. I was diagnosed at 9 w/juevenile rheumatiod arthritis & hypothyroidism, which I know are common w/people w/Celiac.

The doc is skeptical of me having Celiac because I'm not deathly ill, but ordered the blood test anyways. She told me to go gluten free for a few weeks & if the blood test comes back negative, to then eat some gluten & see how it effects me. I'm still trying to get used to paying super close attention to what I eat & today I accidentally ate some gluten. Within a few hours I was suffering from bad cramps, gas & diahrrea, along w/all around feeling drained. I ate around 1:20pm & it's now 10:30 pm & I'm so uncomfortable I'm just laying in bed. I can't fall asleep & it hurts to be in a sitting position. Is it safe to say that even if my blood test comes back negative, I definitely have some kind of issue w/gluten?

Yes, I think it's safe to say. You may find, as many of us have, that many times your own body knows better than your doctor. False negatives are very common with blood tests. If you feel better off gluten, then you have your answer. You will find many friends here. Feel better soon!

tisci02 Newbie
tisci02
Posted
  • Author

Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

Wolicki Enthusiast
Wolicki
Posted
Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

As you browse around here, you will find that many of us have experienced the same thing. I think that docs start pulling the "it's all in your head" card when they don't know or are not willing to dig until they find what is wrong. I was sick for 10 years and diagnosed with everything under the sun before the Celiac dx. I didn't have any of those things, like Lupus and adrenal insufficiency. It was gluten all along causing the problems. Good luck with your new doctor. I have a new one in December and am holding out hope that this one will be different. Good luck to you! I will keep a good thought for you!

carsondcat Newbie
carsondcat
Posted
Thank you for your reply. I definitely know my body better than my doc, but they brush me off as a hypochondriac. I'm always sick & now that I think it was the gluten, I'm going to stop eating it. Unfortunately for all this time, the 6 years I've been having issues, they've been telling me I have a virus on & off & think I'm nuts. I'm going to a new PCP starting in February, so hopefully I will have some luck w/this one.

I first started being ill aged 18 months, after having a bout of pnuemonia, failure to thrive and all that goes with it such as delayed puberty followed, I remember always being starving hungry and when the TOM started things went from bad to worse i was at the Drs every few months and they would put me on iron supplements and tell me to go away, 10 years later i had the diagnosis of Hypochondriac, I was not diagnosed until 2001, which was 38 years after i first showed the signs of Celiac Disease (upon reading i had all the "classic" signs and symptoms). I thought my "D" was normal what would i know... the first time i passed a fully formed motion it was pure agony, i felt it going around the ascending and descending colon, I cried with the pain of it, to be graphic i could even see it moving around my abdomen, it remained extremely painful to go to toilet for quite a while. I have been strictly gluten-free since my blood tests and biopsy in 2001, and i still have trouble keeping weight on and I'm still very small. I still struggle with anemia and low haemaglobin. I have brain fog a lot..

Please keep on, keeping on, i hope you find a health professional that will really listen to what you're saying, because at my worst the pain would be so bad the sweat would roll off me and it would have me curled up in the fetal positioning trying to rock the pain away in tears of agony, it hurt after everything i ate and everything i drank even if it was a glass of water. Don't allow yourself to get as bad as that 6 years is far too long already...

tisci02 Newbie
tisci02
Posted
  • Author
I first started being ill aged 18 months, after having a bout of pnuemonia, failure to thrive and all that goes with it such as delayed puberty followed, I remember always being starving hungry and when the TOM started things went from bad to worse i was at the Drs every few months and they would put me on iron supplements and tell me to go away, 10 years later i had the diagnosis of Hypochondriac, I was not diagnosed until 2001, which was 38 years after i first showed the signs of Celiac Disease (upon reading i had all the "classic" signs and symptoms). I thought my "D" was normal what would i know... the first time i passed a fully formed motion it was pure agony, i felt it going around the ascending and descending colon, I cried with the pain of it, to be graphic i could even see it moving around my abdomen, it remained extremely painful to go to toilet for quite a while. I have been strictly gluten-free since my blood tests and biopsy in 2001, and i still have trouble keeping weight on and I'm still very small. I still struggle with anemia and low haemaglobin. I have brain fog a lot..

Please keep on, keeping on, i hope you find a health professional that will really listen to what you're saying, because at my worst the pain would be so bad the sweat would roll off me and it would have me curled up in the fetal positioning trying to rock the pain away in tears of agony, it hurt after everything i ate and everything i drank even if it was a glass of water. Don't allow yourself to get as bad as that 6 years is far too long already...

I had no outward signs of it as a child. I was anemic & had arthritis & hypothyroidism. I do remember being very young, about 4 years old, when the stomach problems started. There were times on & off, beginning at that age where I would have the sweats from the pain. I would sit in the bathroom & cry because my stomach hurt so bad. The doctors told my mom it was stress. I was also having stomach issues from a medication & they put me on Zantac. I would have months at a time where I would be perfectly fine. I also had a lot of other health issues going on when I was young though, mono, viral meningitis & other sicknesses. I think my stomach issues were looked past because of everything else. I just started to get really bad when I was 19. At this point, I didn't think much about my stomach problems because I was so used to them.

luvthelake21 Rookie
luvthelake21
Posted

It is so sad to hear that it takes so long for people to get diagnosed. My daughter was diagnosed in 2 weeks and had her endo. and was on a gluten free diet with in 4 weeks and 3 years later she has not had many problems with the diet,after the greiving process of course. First I took her to a ped. gastro doctor. He as the one to diagnose her. She wanted to change doctors after he left her gown open during her endo. test.So we looked and found her a adult gastro doctor. Both of these docs were young and her new one is of foreign decent. It seems like forein doctors have more knowledge than American Doctors. It seems like foreign countrys are more prone for people having Celiac so the doctors know to check for it. Some countries check all kids at there 5 year old check up. Keep looking and you will find the right doctor. This is just our experience.

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

Celiac.com Sponsor (A8-M):


tisci02 Newbie
tisci02
Posted
  • Author

I got a letter from the doc today saying my panel was normal. They didn't give me numbers or anything, just said it's normal. I got really sick from eating gluten the other day so I'm gonna stay off it for now. I am going to a new doc in February & they're supposed to be a lot better than the place I go to now, so I'm going to talk to them about it. I didn't eat a lot of gluten in the first place, so I don't know if I eat enough for my levels to be high. Since I had such a strong reaction from eating it after being gluten free for a week, I would really like for them to look into it a little further.

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      This article does not address migraines at all. Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines...
    2. knitty kitty
      - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Excessive dietary tyrosine can cause problems. Everything in moderation. Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese. Sulfites cause a high histamine release. High histamine levels are found in migraine. Following a low histamine diet like the low histamine Autoimmune Protocol diet,...
    3. trents
      - trents replied to Sarah Grace's topic in Related Issues & Disorders
      26

      Headaches / Migraines and Hypoglycaemia

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit.
    4. Scott Adams
      - Scott Adams replied to Russ H's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      KAN-101 Treatment for Coeliac Disease

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."
    5. Scott Adams
      - Scott Adams replied to miguel54b's topic in Related Issues & Disorders
      1

      Body dysmorphia experience

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,156
    • Most Online (within 30 mins)
      7,748
    Shrub
    Newest Member
    Shrub
    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

    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      This article does not address migraines at all.  Yes, red wine and sulfites are often mentioned in connection with migraine triggers. With me, any kind of alcoholic beverage in very modest amounts will reliably produce a migraine. Nitrous oxide generators, which are vaso dialators, also will give me migraines reliably. So, I think most of my migraines are tied to fluctuations vascular tension and blood flow to the brain. That's why the sumatriptan works so well. It is a vaso constrictor. 
    • knitty kitty
      Headaches / Migraines and Hypoglycaemia

      By knitty kitty · Posted

      Excessive dietary tyrosine can cause problems.  Everything in moderation.   Sulfites can also trigger migraines. Sulfites are found in fermented, pickled and aged foods, like cheese.  Sulfites cause a high histamine release.  High histamine levels are found in migraine.  Following a low histamine diet like the low histamine Autoimmune Protocol diet, a Paleo diet, helps immensely.    Sulfites and other migraine trigger foods can cause changes in the gut microbiome.  These bad bacteria can increase the incidence of migraines, increasing histamine and inflammation leading to increased gut permeability (leaky gut), SIBO, and higher systemic inflammation.   A Ketogenic diet can reduce the incidence of migraine.  A Paleo diet like the AIP diet, that restricts carbohydrates (like from starchy vegetables) becomes a ketogenic diet.  This diet also changes the microbiome, eliminating the bad bacteria and SIBO that cause an increase in histamine, inflammation and migraine.  Fewer bad bacteria reduces inflammation, lowers migraine frequency, and improves leaky gut. Since I started following the low histamine ketogenic AIP paleo diet, I rarely get migraine.  Yes, I do eat carbs occasionally now, rice or potato, but still no migraines.  Feed your body right, feed your intestinal bacteria right, you'll feel better.  Good intestinal bacteria actually make your mental health better, too.  I had to decide to change my diet drastically in order to feel better all the time, not just to satisfy my taste buds.  I chose to eat so I would feel better all the time.  I do like dark chocolate (a migraine trigger), but now I can indulge occasionally without a migraine after.   Microbiota alterations are related to migraine food triggers and inflammatory markers in chronic migraine patients with medication overuse headache https://pmc.ncbi.nlm.nih.gov/articles/PMC11546420/  
    • trents
      Headaches / Migraines and Hypoglycaemia

      By trents · Posted

      Then we would need to cut out all meat and fish as they are richer sources of tyrosine than nuts and cheese. Something else about certain tyrosine rich foods must be the actual culprit. 
    • Scott Adams
      KAN-101 Treatment for Coeliac Disease

      By Scott Adams · Posted

      I agree that KAN-101 looks promising, and hope the fast track is approved. From our article below: "KAN-101 shows promise as an immune tolerance therapy aiming to retrain the immune system, potentially allowing safe gluten exposure in the future, but more clinical data is needed to confirm long-term effects."  
    • Scott Adams
      Body dysmorphia experience

      By Scott Adams · Posted

      Thank you so much for having the courage to share this incredibly vivid and personal experience; it's a powerful reminder of how physical ailments can disrupt our fundamental sense of self. What you're describing sounds less like a purely psychological body dysmorphia and more like a distinct neurological event, likely triggered by the immense physical stress and inflammation that uncontrolled celiac disease can inflict on the entire body, including the nervous system. It makes complete sense that the specific sensory input—the pressure points of your elbows on your knees—created a temporary, distorted body map in your brain, and the fact that it ceased once you adopted a gluten-free diet is a crucial detail. Your intuition to document this is absolutely right; it's not "crazy" but rather a significant anecdotal data point that underscores the mysterious and far-reaching ways gluten can affect individuals. Your theory about sensory triggers from the feet for others is also a thoughtful insight, and sharing this story could indeed be validating for others who have had similar, unexplainable sensory disturbances, helping them feel less alone in their journey.
×
×
  • 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.