Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • 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

New With Lots Of Symptoms And Questions

Shashi

Recommended Posts

Shashi Apprentice
Shashi
Posted

Hi, my name is Lisa, and my primary care physician recently tested me for Celiac disease based on symptoms I've been having for several months (or years, depending on if my other symptoms are related.)

As a bit of background, for about the past four or five months, I've been losing weight without even trying to, in spite of eating a lot of fattening foods throughout the holidays. In all, I've lost about 18 lbs. with 15 of them being since I saw my doctor in October. A month ago, I started having nausea, vomiting, and diarrhea, but no fever. It was intermittent - one day I would be fine, then I'd have diarrhea the whole next day. Then for the next two days I'd be okay, then I'd have nausea/vomiting for half of a day or so. This went on for about two and a half weeks, then I got better, though I'd still have the diarrhea every five or six days. This past Friday, I got sick with the nausea, vomiting, and diarrhea again, though this time I had a fever, which makes me think it might have been a stomach virus (which is going around in this area.)I lost about three lbs. from this last episode. (I'm a fluffy gal, and could stay to lose a lot more, but this has got me worried! How can you eat half a pan of fudge in two days and lose weight?)I often also have stomach pain which feels like I'm very hungry, even though I've just eaten.

I saw my PCP at the end of December, and she ran some tests. My potassium was low, which was no surprise, given the vomiting and diarrhea. There was also something on the Celiac panel that came back borderline deficient (I don't know what that particular element was.) So, she's sending me to my GI doctor for a consult.

In addition to all of these symptoms, for the past four years, I've had neurological symptoms that were suspected to be MS. I have nerve pain in my head, hands, feet, legs, etc. I also have had muscle spasms, pain in my joints and bones, extreme fatigue, muscle weakness, tremors, severe gastric reflux, frequent constipation, bloating, gas, gurgling tummy, etc. My MRIs have only recently shown four non-specific T-2 hyperintense foci(lesions), but they're not in the right areas for MS lesions. I've been tested for everything else under the sun over the years. I do have messed up reflexes in my legs, and I'm also off balance a lot.

Do these symptoms sound like Celiac disease? What on that Celiac panel could be borderline deficient and make my doctor suspect Celiac? Should I start on a gluten-free diet before I'm diagnosed, in the hopes that I might get some relief, and how long might that take? How is Celiac disease diagnosed?

(Sorry this is so long!)

Thanks and hugs,

Lisa

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

Celiac.com Sponsor (A8-M):


frieze Community Regular
frieze
Posted

Hi, my name is Lisa, and my primary care physician recently tested me for Celiac disease based on symptoms I've been having for several months (or years, depending on if my other symptoms are related.)

As a bit of background, for about the past four or five months, I've been losing weight without even trying to, in spite of eating a lot of fattening foods throughout the holidays. In all, I've lost about 18 lbs. with 15 of them being since I saw my doctor in October. A month ago, I started having nausea, vomiting, and diarrhea, but no fever. It was intermittent - one day I would be fine, then I'd have diarrhea the whole next day. Then for the next two days I'd be okay, then I'd have nausea/vomiting for half of a day or so. This went on for about two and a half weeks, then I got better, though I'd still have the diarrhea every five or six days. This past Friday, I got sick with the nausea, vomiting, and diarrhea again, though this time I had a fever, which makes me think it might have been a stomach virus (which is going around in this area.)I lost about three lbs. from this last episode. (I'm a fluffy gal, and could stay to lose a lot more, but this has got me worried! How can you eat half a pan of fudge in two days and lose weight?)I often also have stomach pain which feels like I'm very hungry, even though I've just eaten.

I saw my PCP at the end of December, and she ran some tests. My potassium was low, which was no surprise, given the vomiting and diarrhea. There was also something on the Celiac panel that came back borderline deficient (I don't know what that particular element was.) So, she's sending me to my GI doctor for a consult.

In addition to all of these symptoms, for the past four years, I've had neurological symptoms that were suspected to be MS. I have nerve pain in my head, hands, feet, legs, etc. I also have had muscle spasms, pain in my joints and bones, extreme fatigue, muscle weakness, tremors, severe gastric reflux, frequent constipation, bloating, gas, gurgling tummy, etc. My MRIs have only recently shown four non-specific T-2 hyperintense foci(lesions), but they're not in the right areas for MS lesions. I've been tested for everything else under the sun over the years. I do have messed up reflexes in my legs, and I'm also off balance a lot.

Do these symptoms sound like Celiac disease? What on that Celiac panel could be borderline deficient and make my doctor suspect Celiac? Should I start on a gluten-free diet before I'm diagnosed, in the hopes that I might get some relief, and how long might that take? How is Celiac disease diagnosed?

(Sorry this is so long!)

Thanks and hugs,

Lisa

You can't stop eating guten 'till after the testing is done....that said, if you have a great deal of personal flexibility (time) try getting on the doctor's cancelation list, so that you can be seen as soon as possible!

mushroom Proficient
mushroom
Posted

Welcome to the board, Lisa.

Thank goodness your doctors recognized your symptoms - they sound like classic celiac symptoms. The celiac panel consists of five or six different blood tests, so it's hard to say which one came back borderline, but it was obviously of significance of she is referring you to a GI. No, you should keep eating gluten until all your testing is finished so as not to affect the results, because in the absence of gluten some healing can take place right away.

Most people are unaware that gluten can cause neurological symptoms, including UBO's (unidentified bright objects) on brain MRI, and gluten ataxia (balance problems.)

Celilac disease is diagnosed by the blood panel, which it seems you have already had, and by endoscopy of the small intestine with biopsies (they look at your small intestine by placing a tube down your throat under sedation, and take several samples for examination under microscope.) The endoscopy is considered to be the 'gold standard' of celiac diagnosis because the current definition of celiac disease is damage to the small intestine. However, be aware that many people with neurological symptoms may not have small intestine damage, although you have been having some pretty good GI symptoms too. Based on your symptoms I would suggest that as soon as your testing is over you go gluten free regardless of the result, because there is at least a 20% false negative rte in the testing and our symptoms sound so classic.

Hugs to you, and I hope you can get your biopsy done soon and start to heal.

Archived

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

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


  • Member Statistics

    • Total Members
      131,198
    • Most Online (within 30 mins)
      7,748
    Jamie0230
    Newest Member
    Jamie0230
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Scott Adams · Posted

      Clearly from what you've said the info on Dailymed is much more up to date than the other site, which hasn't been updated since 2017. The fact that some companies might be repackaging drugs does not mean the info on the ingredients is not correct.
    • RMJ
      Waiting Gastroenterology review

      By RMJ · Posted

      To evaluate the TTG antibody result we’d need to know the normal range for that lab.  Labs don’t all use the same units.  However, based on any normal ranges that I’ve seen and the listed result being greater than a number rather than a specific number, I’d say yes, that is high! Higher than the range where the test can give a quantitative result. You got good advice not to change your diet yet.  If you went gluten free your intestines would start to heal, confusing any further testing,
    • Bev in Milw
      Does Dailymed.nlm.nih.gov site have filters for gluten?

      By Bev in Milw · Posted

      Scott is correct….Thank you for catching that!      Direct link for info  of fillers.    http://www.glutenfreedrugs.com/Excipients.htm Link is on 2nd page  of www.glutenfreedrugs.com   Site was started by a pharmacist (or 2) maybe 15-20 yrs ago with LAST updated in  2017.  This makes it’s Drug List so old that it’s no longer relevant. Companies & contacts, along with suppliers &  sources would need to be referenced, same amount effort  as starting with current data on DailyMed      That being said, Excipient List is still be relevant since major changes to product labeling occurred prior ’17.           List is the dictionary that sources the ‘foreign-to-us’ terms used on pharmaceutical labels, terms we need to rule out gluten.    Note on DailyMed INFO— When you look for a specific drug on DailyMed, notice that nearly all of companies (brands/labels) are flagged as a ‘Repackager’… This would seem to suggest the actual ‘pills’ are being mass produced by a limited number of wholesaler suppliers (esp for older meds out of  patent protection.).      If so, multiple repackager-get  bulk shipments  from same supplier will all  be selling identical meds —same formula/fillers. Others repackager-could be switching suppliers  frequently based on cost, or runs both gluten-free & non- items on same lines.  No way to know  without contacting company.     While some I know have  searched pharmacies chasing a specific brand, long-term  solution is to find (or teach) pharmacy staff who’s willing help.    When I got 1st Rx ~8 years ago, I went to Walgreens & said I needed gluten-free.  Walked  out when pharmacist said  ‘How am I supposed  to know…’  (ar least he as honest… ). Walmart pharmacists down the block were ‘No problem!’—Once, they wouldn’t release my Rx, still waiting on gluten-free status from a new supplier. Re: Timeliness of DailyMed info?   A serendipitous conversation with cousin in Mi was unexpectedly reassuring.  She works in office of Perrigo, major products of OTC meds (was 1st to add gluten-free labels).  I TOTALLY lucked out when I asked about her job: “TODAY I trained a new full-time employee to make entries to Daily Med.’  Task had grown to hours a day, time she needed for tasks that couldn’t be delegated….We can only hope majorities of companies are as  conscientious!   For the Newbies…. SOLE  purpose of  fillers (possible gluten) in meds is to  hold the active ingredients together in a doseable form.  Drugs  given by injection or as IV are always gluten-free!  (Sometimes drs can do antibiotics w/ one-time injection rather than 7-10 days of  pills .) Liquid meds (typically for kids)—still read labels, but  could be an a simpler option for some products…
    • Ginger38
      Food Allergies

      By Ginger38 · Posted

      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • JForman
      7yo struggling!

      By JForman · Posted

      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
×
×
  • Create New...