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

What's Up With This?


nananana

Recommended Posts

nananana Newbie

I went gluten-free in support of my husband. Totally unexpectedly, my health began to improve. A bumpy, sometimes itchy, rash just under the skin on my arms disappeared! My hair quit falling out. Nails were stronger. Mind sharper. Stomach flattened. A lot of "little things" got better.

Headaches were something I never had. Not seldom, NEVER! Never had allergies -runny nose, itchy eyes, scratchy throat - never a sinus infection. (all of my siblings do)

BUT, after 5 weeks of gluten-free, I suddenly had a terrible headache at my temples and along the back of my neck. I checked the label and there it was, we had accidently eaten gluten! My stomach became upset - was I becoming a hypochondriac?? By the end of the day the rash and brain fog were back. And now, whenever a headache comes, we check for the gluten connection. And it is always there!

Does this sound crazy to you? I never had a headache eating LOTS of gluten - but now that I've been gluten-free, I react to a small crumb of wheat? Has anyone else experienced this?


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



Celiac.com Sponsor (A8-M):



T.H. Community Regular

I believe this is where I sound like granpa Simpson and say: welcome to my world! ;)

Most Celiacs notice that their symptoms to gluten increase - or start in the first place - after they have been gluten free for a while. So...sounds like you may have found out something about your health, eh?

That is completely where I'm at, although I was diagnosed officially (due to something else entirely). I never noticed a reaction to eating gluten. I had health problems, but they didn't coincide specifically to me eating something and then reacting, you know? Now, after a year away from gluten? If I get the tiniest, teeniest amount, I get vertigo, nausea, headaches, vomiting.

Blech.

So your experience is completely within the Celiac realm of possibility. Although it congratulations on figuring out something that is making you feel better and healthier!!

psawyer Proficient

It seems to be fairly common for people to develop a "tolerance" level when constantly eating gluten, and then lose it after being gluten-free for a while.

GlutenFreeManna Rising Star

Your experiences are really common. I never had stomach problems prior to going gluten free. I had other symptoms, but not the typical digestive ones. Now the smallest crumb and I have bad stomach pain and D for days in addition to all my other symptoms. It sounds like you have a gluten intolerance. Welcome to the board!

nananana Newbie

I can't thank you all enough for explaining this to me! This site has really been helpful. I've been looking over all of the gluten health issues and unfortunately it reads like my family's history.

We have been off gluten for about 6 weeeks now, so should we send for the Enterolab test or is there another one that would give us an accurate result?

ravenwoodglass Mentor

I can't thank you all enough for explaining this to me! This site has really been helpful. I've been looking over all of the gluten health issues and unfortunately it reads like my family's history.

We have been off gluten for about 6 weeeks now, so should we send for the Enterolab test or is there another one that would give us an accurate result?

You could go with Enterolab but keep in mind that they don't diagnose they look for antibodies in the stool but that is not considered diagnostic by most doctors. For all the other available tests you would need to go back on gluten for a couple of months before testing.

nananana Newbie

My husband is doing so well - I don't think we could take a chance! This diet has saved his life . . . . .


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



Celiac.com Sponsor (A8-M):



Archived

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


  • 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
      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
      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
      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
      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
      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...