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

Hello

DavinaRN

Recommended Posts

DavinaRN Explorer
DavinaRN
Posted

Just wanted to introduce myself. I'm 43, married, mother to special needs son. I have not been diagnosed by a Dr, but the way I feel better when I eat a non gluten meal tells me this may be the answer. I pretty much ruled out wheat allergy, because reacted to a granola with barley malt. I realize that until tested I need the gluten, so one meal a day contains it (hoping Endo does blood work the 22nd). In the last 8 yrs, I have been dx with partial sensory seizures, PCOS, diabetes, gall bladder disease (removed), lung birth defect (1/2 of lung removed-we were really hoping this would fix bone weary exhaustion). I also have migraines, long bone and joint pain (but no arthritis seen even on MRI), vit D deficiency, still exhausted, frequently sick to tummy (motion sick feeling), feel like I need to have bowel movement frequently, but can't. My PCP said without diarrhea is couldn't be wheat related; so I'm sort of lying to Endo and telling her they suspect my mom has it so hopefully she will do blood work. I think my mom does have it based on tummy issues she has had since her 30's.

Have a great day everyone.

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

Celiac.com Sponsor (A8-M):


mushroom Proficient
mushroom
Posted

Thanks for your story, Davina. May I say that your doctor doesn't know that the other 50% of celiacs have constipation, not diarrhea??? You do sound, at the very least, gluten intolerant. I hope you convince someone to test you (tell whatever lies are necessary for this :P :P :ph34r: because sometimes that's what it takes). And I am a Pinocchio :D

Let us know how things turn out.

GottaSki Mentor
GottaSki
Posted

Welcome!

Your PCP is wrong - glad you are pushing to be tested. Keep eating gluten until testing is complete and if the testing should all be negative - remove all gluten for at least three months. As you have already found - elimination is often the best test.

Good Luck to you :)

CeliacShack Rookie
CeliacShack
Posted

Best of luck to you. It's so frustrating when doctors won't listen.

mamaw Community Regular
mamaw
Posted

Please start nw & consume lots & lots of wheat! that way the test will be accurate....

DavinaRN Explorer
DavinaRN
Posted
  • Author

Thanks for the replies. Had pasta for breakfast and by lunch was feeling a million times worse. Since I'm diabetic, still force feed myself a gluten free lunch and called my PCP associate for appointment. Told him about my fatigue and tummy issues and my little white lie. He seemed ready to do test until he asked about bowel movements (yes, I'm a nurse but no I didn't know it shouldn't float and be beige). At that point, he said GI doctor that I need lots of lab work, upper and lower scopes. I have a malabsorption issue (duh that's a symptom) and need someone who can tell me best way to replace stuff. So long story short is I can't afford all these tests, so going gluten free. I figure as I heal I will absorp and it will sink. If not I'll do the challenge after the first of the year and see the GI.

Now my question, how long before I start feeling better?

GottaSki Mentor
GottaSki
Posted

I understand your frustration, but strongly encourage you to get a full celiac blood panel now. Once gluten free you lose the possibility of accurate blood tests and people often regret not getting the blood tests before going gluten-free. As time passes you may doubt the need to be gluten free - improvement can be slow - often you have improvement at first followed by some setbacks - which leads to more questions, doubts and frustration.

Perhaps you can explain to your PCP that you can not afford to have scopes right now and will be removing gluten to monitor symptom improvement. Explain that you understand removing gluten will make celiac testing inaccurate so you would like to have it done now and will take the referral to GI if you do not improve???

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

Celiac.com Sponsor (A8-M):


DavinaRN Explorer
DavinaRN
Posted
  • Author

GottaSki I already went gluten free. I tried everything I could to talk him into it, was about in tears. If need be I'll do a challenge latter.

GottaSki Mentor
GottaSki
Posted

So sorry - unfortunately I know the frustration of doctors dismissing symptoms - had my symptoms dismissed for years. Glad you are ready and willing to go gluten-free. The transition can be very tough, but elimination is often the best test.

Wishing you speedy healing :)

GFinDC Veteran
GFinDC
Posted

Healing time varies a lot. There is no one answer that fits everyone. Ii helps to start off with a whole foods diet and keep your meals simple. Grain free may help also.

DavinaRN Explorer
DavinaRN
Posted
  • Author

My endo is going to do blood test, so going back to gluten after being off 4 days. Test on the 19th.

GFinDC Veteran
GFinDC
Posted

Sounds good Davina. Be sure and get a copy of your test results in writing. The test results should include the actual tested numbers and the range of acceptable numbers.

Some people have C and some people have D with celiac. Then some others have both C+D at different times. Your doc doesn't know what he is talking about.

NightOwl Newbie
NightOwl
Posted

Thanks for your story, Davina. May I say that your doctor doesn't know that the other 50% of celiacs have constipation, not diarrhea??? You do sound, at the very least, gluten intolerant. I hope you convince someone to test you (tell whatever lies are necessary for this :P :P :ph34r: because sometimes that's what it takes). And I am a Pinocchio :D

Let us know how things turn out.

I didn't know celiacs could suffer from constipation! That was the story of my life, in fact, I had intestinal/digestive problems on/off since childhood but the bane of my life was constipation, then in the last couple of years began having both intermittently and finally very directly after eating wheat sometimes, so it's very possible I already had problems with gluten or at least wheat way back then.

Oh, sorry! Hi Davina! I hope you will soon be able to go on your gluten-free diet so you can start feeling better soon!

  • 4 weeks later...
WOEProGirl Newbie
WOEProGirl
Posted

Sad story, same here! My PCP brushed me off, wouldnt run tests, prescribed steroid cream for my (totally non-gluten like, I admit) rash. She said, well, if you honestly believe that's your problem no one is stopping you from eliminating it on your own. It would have been easier to committ with some certainty, though. In my family, dad is the only one actually diagnosed with "intollerence" but his niece (my 1st cousin), my brother and I all eat gluten-free of our own choice. It just feels too good to ever even consider consuming one more morsel of gluten voluntarily. It was a bumpy road at first and I doubted my choice but I acheived certainty 7 months in when I decided to try casein (dairy) free as well. In 48 hours I felt SO GOOD, I had no idea how good good felt!! Even though my gluten-free family and I all talk frequently, my dad, brother and I all came to the decision to try casein free separately. It was all in the same 1 week period. Both my bro and I ate Lactaid ice cream (separately) and it made us sicker than anything since we had gone gluten-free. Dad went to a cooking class where the instructor highly encouraged all gluten-free to try Gluten-free Casein-free. Gluten-free Casein-free was the answer for us! Now we are all working to help our cousin learn what works and hopefully she will get better.

I'm 27 years old, my bro is 31. We suspect we've been having absorption problems all our lives based on non-genetic related spine and tooth development. But we both got really sick and immune system related px in our mid 20s. For me it was bad sleep, of all things, that finally got me to start complaining. Now I have no more arthritis-like pain, lichen plants erupting on all new and some old scars, brain fog (I hear others complain of that), normal stool, no more tummy aches, and sleep great (down to 7 hr night from 10)!

My first post on here! The posts others took the time to write have helped me so tremendously! I feel like I am not alone and there is hope!

mushroom Proficient
mushroom
Posted

Welcome to the board, WOEProGirl. I am glad to hear that some of our ramblings have been useful to you. Wishing you continued good health. And by the way, somewhere down the line you may once again be able to eat dairy :)

GFinDC Veteran
GFinDC
Posted

Welcome Weoprogirl! Sounds like you have one smart family there. That's neat that you all stopped casein the same week. Celiac destroys the vili lining the small intestine. Those villi produce an enzme called tactase which digests the sugar in dairy called lactose. After a while on the gluten-free diet those vili may heal and start producing lactase enzyme again. And then if the dairy problem is just lactose intolerance, you could be able to eat dairy again. If it really is csein intoelrance, that is different. Casein is protein in dairy.

Some starting the gluten-free diet tips for the first 6 months:

Get tested before starting the gluten-free diet.

Get your vitamin/mineral levels tested also.

Don't eat in restaurants

Eat only whole foods not processed foods.

Eat only food you cook yourself, think simple foods, not gourmet meals.

Take probiotics.

Take gluten-free vitamins.

Take digestive enzymes.

Avoid dairy.

Avoid sugars and starchy foods.

Avoid alcohol.

FAQ Celiac com

http://www.celiac.co...uestions-about-

celiac-disease/

Newbie Info 101

http://www.celiac.co...ewbie-info-101/

What's For Breakfast Today?

http://www.celiac.co...reakfast-today/

What Did You Have For Lunch Today?

http://www.celiac.co...or-lunch-today/

What Are You Cooking Tonight?

http://www.celiac.co...ooking-tonight/

Dessert thread

http://www.celiac.co...ts-for-dessert-

tonight/page__pid__802399#entry802399

Easy yummy bread in minutes

http://www.celiac.co...ead-in-minutes/

How bad is cheating?

http://www.celiac.co...uten-free-diet-

periodically/

Short temper thread

http://www.celiac.co...per-depression/

Non celiac wheat sensitivity article

http://www.celiac.co...ists/Page1.html

WOEProGirl Newbie
WOEProGirl
Posted

I've done some more research and reading (on the web) since my first post and found info about the GAPS diet - so there's hope for dairy yet! I was in search of something more than just eliminating gluten and casein because I was (and read about others) experiencing an ongoing spiral to more and more sensitivities. That's just not right! It makes sense that all the damage that's already been done on my insides would continue leading to more problems. I'm struggling with starting up the GAPS intro diet using only web resources and I can't wait until the book arrives! Although I hear its really dense.

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. TheDHhurts
      - TheDHhurts posted a topic in Gluten-Free Foods, Products, Shopping & Medications
      0

      Prana Organics no longer GFCO-certified

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what...
    2. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    3. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    4. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    5. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,927
    • Most Online (within 30 mins)
      7,748
    drw80whz
    Newest Member
    drw80whz
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Who's Online (See full list)

    • There are no registered users currently online

  • Upcoming Events

  • Posts

    • TheDHhurts
      Prana Organics no longer GFCO-certified

      By TheDHhurts · Posted

      I've been buying my seeds and nuts from Prana Organics for a number of years because the products have been GFCO-certified. I just got a new order delivered of their flax and sunflower seeds, and it turns out that they are no longer GFCO-certified. Instead, it just has a generic "Gluten Free" symbol on the package. I reached out to them to ask what protocols/standards/testing they have in place. The person that wrote back said that they are now certifying their gluten free status in-house, but that she couldn't answer my questions related to standards because the person with that info was on vacation. Not very impressed, especially since it still says on their website that they are GFCO-certified. Buyer beware!
    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
×
×
  • 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.