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. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,696
    • Most Online (within 30 mins)
      7,748
    Knotalota
    Newest Member
    Knotalota
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • 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.