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

Can't Get A Diagnosis! Frustrated!

nu-to-no-glu

Recommended Posts

ravenwoodglass Mentor
ravenwoodglass
Posted
I just registered today. Hello everyone. I am getting tested for Celiacs and Crohn's soon. This is all pretty scary. I've been reading some posts and felt instantly sad for everyone. I'm 41 yrs old. No one in the family with celiacs ( that we know of). I was just wondering....Should my allergist or gastroenterologist test for this? I am so confused with everything. I went into the ER for throwing up for 6 wks from a sinus infection...3 days later...I might have celiacs or crohn's; have a cyst on my ovary; found spots on my lungs, and I am now on a very special gluten-free diet until I am officially diagnosed. Very overwhelming. Oh yea... I am vit b12 deficient. :( OK I am done pouting now. I will read more of your guy's stuff. Maybe I can get a handle on this. After a nap.....Thanks for listening.

The doctors putting you on the diet before they do any testing will cause the tests to be a false negative. However sometimes dietary response is the best test there is. If your doctors are going to test you need to go back on gluten until the tests are finished. Otherwise they will want you to do a lengthy gluten challege which can be a really nasty experience after we have been gluten free and started to heal.

  • 1 month later...
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


csoctavia Newbie
csoctavia
Posted

hi,

I'm having the same problem with getting a doc on my side.After my son,I gained almost 40 lbs (I'm 5' and never wieghed over 100)and can not lose it.My doc keeps saying its stress or IBS.I had no control of bms and was sick after every meal. I saw on tv this diet were you give up 5 things,one was gluten.I finally started to feel better! After the 21 days I entered everything back into my diet and was fine till I ate gluten.I have been off it for almost 4 months and now my doc just tested me.He sent me to five other docs that all said I should get tested for it,but he didn't agree. Ofcouse the test came out neg.He wants me to eat gluten for 2 months then come back.I don't want to be that sick again!! My doc finally decided that he is not comfortable saying I have celiac disease but if not eating gluten helps,don't eat it.He just told me this yesterday.Don't know what to do next,but maybe I'll just stop eating gluten and say the heck w/docs!!My only advice to you is do what makes you feel good,I take fiber choice in the morn to help with making it to the bathroom,and for your baby,butt paste,you can get it at wal-mart,it will cure the diaper rash up almost immeditly,I swear by it!!Hope I helped,and if anyone has advice for me,please do,I'm pretty much just giving up on docs and living my life now,but if you know how to lose weight,help please!!

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. Scott Adams
      - Scott Adams replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in duri...
    2. knitty kitty
      - knitty kitty replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome, While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat. Farm equipment and transport trucks are used to harvest different crops. It would be really expensive to have separate trucks and packaging lines for each crop. I have found sorting or picking through the peas or lentils...
    3. trents
      - trents replied to Thoughtidjoin's topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it...
    4. Scott Adams
      - Scott Adams commented on Scott Adams's article in Origins of Celiac Disease
      7

      Do Antibiotics in Babies Increase Celiac Disease Risk Later in Life? (+Video)

      I think you're reading way too much into this study--it is a large population-based study, and when they do these they aim not to focus it on a particular smaller sub-set of the population, in fact, they take measures to be sure that doesn't happen.
    5. Thoughtidjoin
      - Thoughtidjoin posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      3

      Dried Chickpeas

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this? If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many tha...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,432
    • Most Online (within 30 mins)
      7,748
    ainsleydale1700
    Newest Member
    ainsleydale1700
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • Scott Adams
      Dried Chickpeas

      By Scott Adams · Posted

      If a package of dried chickpeas or lentils says “may contain” or “may have been cross contaminated,” that usually means they were processed in facilities that also handle wheat, barley, or rye. The concern is not gluten dissolved on the surface like dust that can simply be rinsed away, but small fragments of gluten-containing grains that may be mixed in during harvesting, storage, or packaging. Rinsing and sorting can reduce surface flour and remove visible stray grains, and many people do this successfully, but it does not guarantee that all gluten contamination is eliminated. Some limited testing has shown that naturally gluten-free grains and legumes can contain measurable gluten when cross-contact occurs in shared facilities, which is why manufacturers use precautionary labeling. The seriousness depends on the individual: for someone with celiac disease, even small amounts of gluten can trigger intestinal damage, so choosing certified gluten-free legumes is the safest option. Manufacturers are not necessarily being overly cautious; they are often acknowledging real cross-contact risk in complex agricultural supply chains.
    • knitty kitty
      Dried Chickpeas

      By knitty kitty · Posted

      Welcome,  While picking through chickpeas and lentils I have found little pebbles and on occasion, a kernel or two of wheat.  Farm equipment and transport trucks are used to harvest different crops.  It would be really expensive to have separate trucks and packaging lines for each crop.   I have found sorting or picking through the peas or lentils along with a good rinse sufficient to make them safe for me.  Do remember that lentils and such are high in carbohydrates.  Eating a diet high in carbs can lower thiamine B1.  Good sources of Thiamine and other B vitamins are meats.  Extra thiamine is needed for tissue repair to grow the villi back and recovery from malabsorption.  Low thiamine symptoms (gastric Beriberi) are very similar to symptoms of a glutening.  Try adding thiamine hydrochloride or Benfotiamine and see if you still react to chickpeas and lentils the same way. Supplementing with extra thiamine is safe and nontoxic.   Best wishes.
    • trents
      Dried Chickpeas

      By trents · Posted

      Welcome to the celiac.com community, @Thoughtidjoin! I would think so, yes. But you need to realize that cross contamination studies with lintels have shown the real problem isn't only coming in contact with gluten containing grains in processing but in the actual mixing in of cereal grain seeds in significant quantities with the lentils. I think it was a study done by Gluten Free Watchdog I'm thinking of but they did an actual count of the seeds in a purchased mainline food company bag of lintels and found something like 20% of the content was wheat seeds. So, you'd better do some sorting first.
    • Thoughtidjoin
      Dried Chickpeas

      By Thoughtidjoin · Posted

      Can I wash gluten off dried chickpeas or green lentils when the packet says “may have been cross contaminated?” Has there been any research into this?  If so what are the results? If no research has been done why not? I am getting mixed advice from different sources, how serious is this or are the food manufacturer being over cautious? Many thanks Catherine
    • catnapt
      Collecting all possibly related lab work?

      By catnapt · Posted

      I've got some lab work results going back to 2010, various MRIs and CT scans and ultrasounds. I discovered two things that MIGHT be of interest to the GI doc tell me what you think? one is the results to an abdominal CT scan with contrast in 2013 that includes this:  "there is some thickening seen in the second and third portions of the duodenum"    Since this CT scan was for left lower quad pain, it was not followed up on   Then in May of 2024 I saw a foot specialist for problems with my feet. Some of that pain is due to a very obvious deformity of both of my legs- the right worse than the left. The dr suggested that my symptoms sounded like an auto immune condition (???) and I thought he was nuts but he ordered some lab work- it came back negative except for a weak positive on one test HLA-B27 and there was a follow up test recommended but that was never ordered and this dr gave me a useless Rx for custom insoles which he refused to address - and my calls to his office were never returned.   At that time I was having all over joint pains, plus some numbness in my feet (also stiffness) and some burning pain in my toes- esp the big toe on the right foot (the more deformed side of my body)   The last time I was eating any appreciable amount of gluten containing foods was in the period of Nov 2024 to around sometime in the summer of 2024. I regularly ate a barley soup that I loved and had subs and pizza and toast etc. I was no longer eating wheat pasta, had already switched to brown rice pasta but otherwise I had not yet made a clear connection between what I was calling 'refined grain products' and any symptoms that I had. And the symptoms were vague and could be attributed to other things.   I was referred to a neurologist in late 2023 for symptoms  of confusion/disorientation, that included loss of balance that I attributed, in part, to the inability to feel where my feet were. Some symptoms such as high spikes in blood pressure (some close to 200 over 100! scary stuff) were later determined to be due to covid or long covid (also had loss of sense of smell and taste)    I had periods of dizziness that did NOT include any spinning sensations, it was more of a feeling of lightheadedness as if my mind would go blank- very strange, never really got any answers about that but that eventually went away so not worried about that   WHAT OTHER THINGS from my past records might be good for the GI dr to know? I had my very first Vit D test done in 2023 and it was low at 23, supplements have gotten that up in the range of adequate but values varied up and down... most recent test was Nov 2025 and it was 45ish I think. That's on a min of 5000Ius per day (there are some fortified foods I eat sometimes that have added vit D)   I thought my serum calcium ran on the low side but it turns out that the reference ranges have changed for the labs that I use- one changed their RR back around er, 2014 I think? so I have no clue how to compare the results before and after those changes   calcium has never been below normal and most of my blood work looks "normal" except during illness or other issues like if I'm in afib- blood work looks insane LOL    I don't know what to make of all this but it sure will be nice to get some answers!         
×
×
  • 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.