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

Does This Sound Familiar ?

Mary Contrary

Recommended Posts

Mary Contrary Rookie
Mary Contrary
Posted

Opps !! Mods I see I put this in the wrong spot..should be in Pre-diagnosis...

I have been lurking around here for a month or two..

I have had constant D for 3 months...nothing helps, Impodium, Pepto, or some high powered med..Diphenoxylate & Atrophine.

Have been going to my regular Doc about once a week is seems complaining..had all the stool test for various things..and a few blood tests and she even had a Celiacs panel done, or course it was negative..but here is the deal, I cut out all wheat and gluten about 2 months ago, and now finally this last week I have seen a bit of improvement in the D, oh by the way I have added Psyllium Husks to my diet and it has firmed things up a bit ...

Oh her best advice, my Doc, was to go home and eat lots of applesauce, and have some toast.. :blink::angry::rolleyes:

I found a great Gastroenterologist, on my own, but at the same clinic, anyway he listened to everything I had to say and my feelings that it could be Celiacs, I am having a colonoscopy and an upper gastrointestinal exam to get biopsy of my small intestines, this coming Tuesday....I am actually looking forward to all of this, perhaps I will get some much needed answers, although I am so sure it is Celiacs. Up until the last 3 months, I have always noticed that if I ate too much bread or spagetti, pizza, what have you, it would give me C quite a bit of the time.

I am also hypo-thyroid, which has caused me intestional problems off and on a bit too...if my meds are too low, I get major C....but just had my TSH checked any everything is good there.

I love this forum, you guys have been a life saver for me these last few months.

I am wondering since I have been off of wheat/gluten for two months do you thing it will effect the biopsies..I am thinking if it is this, my intestines must still be pretty ragged..

thanks for listening...

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

Celiac.com Sponsor (A8-M):


happygirl Collaborator
happygirl
Posted

Welcome to the board!

Chances are, your biopsy will not accurate. You have to be eating gluten for an extended period of time (months) for it to be accurate.

Think of it like blood sugar testing for diabetes. Before someone starts managing their diet, and they test their blood, their blood levels are all out of wack when they are tested. They start managing their diet, and then when they re-test, their blood sugar levels "should" be normal. Having normal blood sugar levels then doesn't mean that you don't have diabetes...it just means that it is managed and well controlled.

You can think of the diabetes example in relation to Celiac. The reaction only occurs when you are ingesting gluten. If there is 100% no gluten, then the reactions stop, and the body begins to repair itself. Plus, Celiac damage can be patchy anyways, so even when eating gluten foods for an extended period of time, doctors can easily miss Celiac damage. Add the fact that you are healing.....and it could be pretty hard to find damage that is left.

(I know this from experience. I had positive bloodwork and went gluten free on the advice of my ignorant doctor. 5 weeks later I had the biopsy and it was negative. But, I react horribly to gluten. We decided it was not worth it to put me on months of gluten to test what we already know)

You will need to have this discussion with your doctor, because your biopsy results could very likely turn up a false negative.

On the other hand, you could be non-celiac gluten intolerant, which means that the blood work and biopsy, even when eating gluten will not be positive (these tests are for Celiac gluten intolerance, and not non-Celiac gluten intolerance). The treatment is still the same: Do not eat gluten :)

Mary Contrary Rookie
Mary Contrary
Posted
  • Author
Welcome to the board!

Chances are, your biopsy will not accurate. You have to be eating gluten for an extended period of time (months) for it to be accurate.

Think of it like blood sugar testing for diabetes. Before someone starts managing their diet, and they test their blood, their blood levels are all out of wack when they are tested. They start managing their diet, and then when they re-test, their blood sugar levels "should" be normal. Having normal blood sugar levels then doesn't mean that you don't have diabetes...it just means that it is managed and well controlled.

You can think of the diabetes example in relation to Celiac. The reaction only occurs when you are ingesting gluten. If there is 100% no gluten, then the reactions stop, and the body begins to repair itself. Plus, Celiac damage can be patchy anyways, so even when eating gluten foods for an extended period of time, doctors can easily miss Celiac damage. Add the fact that you are healing.....and it could be pretty hard to find damage that is left.

(I know this from experience. I had positive bloodwork and went gluten free on the advice of my ignorant doctor. 5 weeks later I had the biopsy and it was negative. But, I react horribly to gluten. We decided it was not worth it to put me on months of gluten to test what we already know)

You will need to have this discussion with your doctor, because your biopsy results could very likely turn up a false negative.

On the other hand, you could be non-celiac gluten intolerant, which means that the blood work and biopsy, even when eating gluten will not be positive (these tests are for Celiac gluten intolerance, and not non-Celiac gluten intolerance). The treatment is still the same: Do not eat gluten :)

thank you for your reply and advice...and I have already decided no matter what happens with the tests, I am off of gluten for life...I think the proof is in the pudding, I am already feeling much better and I am going to stick with this..

I also had horrible bloating and major gas....and that has gone away as well... :D

happygirl Collaborator
happygirl
Posted

That sounds like a great plan to me!!!!! It amazes me that there are people who know that something bothers them, but don't stop it, because a test doesn't confirm it. Our goal on this board is to provide information, education, and support for the gluten free lifestyle...regardless of its form: celiac, gluten intolerance, gluten allergy, or personal choice.

My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

Positive dietary response is an important diagnostic tool!! I am happy that you have found the proof in the pudding...the gluten free pudding, of course :P

Let us know what else we can do to help!!!

Laura

Mary Contrary Rookie
Mary Contrary
Posted
  • Author
That sounds like a great plan to me!!!!! It amazes me that there are people who know that something bothers them, but don't stop it, because a test doesn't confirm it. Our goal on this board is to provide information, education, and support for the gluten free lifestyle...regardless of its form: celiac, gluten intolerance, gluten allergy, or personal choice.

My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

Positive dietary response is an important diagnostic tool!! I am happy that you have found the proof in the pudding...the gluten free pudding, of course :P

Let us know what else we can do to help!!!

Laura

lol..I say that too...it's like 'hey it hurts when I hit myself in the head with a hammer..wonder what I should do about it'... :P

Yeah you people are awesome on here...after about 2 months I am getting closer to a normal, can I say it...turd... :D:)<_< ..it's nice to have some other folks who can relate to all of this...

  • 3 weeks later...
Mary Contrary Rookie
Mary Contrary
Posted
  • Author

Sorry for the double post, but wanted to get back to you wonderful folks on here and maybe this will help some other poor fool out there as well..

I added it to my sig, but here is what I have confirmed Microscopic/lymphocytic colitis ..but I am still staying gluten free, because initially it just made me feel better, it didn't do anything for the constant D, but now I have an answer for that..and I am doing much much better...and I know you people can relate to this..I am even back to real turds... :P

I have been gluten free for almost 3 months now as well..and am sticking to it...everything my body is telling me is that I am on the right track, despite the negative tests.

and of course I have "friends" who say "well if the tests says you can have wheat, then what's the problem" and then they look at me like I am nuts...but my entire family, and especially my husband, are extremely supportive and know I am not crazy.

It has been fantastic to come here and read what so many of you have to say, and how true it rings for me as well...

I also have to say in my Docs defense that Microscopic/lymphocytic colitis can go undiagnosed for years, it is hard to find..so I do have lots of faith in the man. They even felt at the clinic if wheat bothers me, well don't eat it. Duh-o...

Merry Christmas

tarnalberry Community Regular
tarnalberry
Posted

Yep, being gluten-free for that long will affect your results, and good for you for listening to your body! :)

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

Celiac.com Sponsor (A8-M):


Nancym Enthusiast
Nancym
Posted
My mom and I talk about the joke (Patient: Doctor it hurts when I do this. Doctor: Well don't do it)....why doesn't that philosophy apply more to gluten?!!! I get sick when I eat gluten...so I don't eat it, but I don't care what anyone wants to label it as :)

I think about that too, except in our case the doctor says to keep doing it and thinks we're nuts if we stop! Sheesh, the world is upside down.

GlutenWrangler Contributor
GlutenWrangler
Posted

The diet will definitely affect the test, and it's already too late to re-introduce gluten for the biopsy. Just keep with the diet and don't worry about a negative biopsy. You could still have an accurate result if you get tested through Enterolab. That's if you want to know for sure, and if you want to check your genes. Good luck.

-Brian

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...