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

Did She Get Over It?

Roda

By Roda
in Doctors

Recommended Posts

Roda Rising Star
Roda
Posted

My sister in law was telling me that my neice has been having some GI issues and has been seeing the doctor. I mentioned to her that my niece should tell them that her aunt has celiac at her next appointment. Well, I was chatting to my niece online this morning and she told me she was going to get tested. Long story short she is one of my brother's three children. My brother has GI issues and sarcoidosis. I'm convinced he has celiac. Anyway, she asked the medical person (either a PA, NP or an intern according to my niece) about getting tested for celiac that her aunt has it and she knows that it is genetic. The medical professional said to her "Did she get over it?" :huh: I'm still amazed of the lack of education. Luckily my niece is a fairly intellegent college student and didn't think that was right and figured that they didn't know anything about it. I am worried since she is continuing to see this group that she won't get the proper testing and information. I sent her an email of the tests she needs, some information and some reputable websites for her to do some reading including this one. I'm not wishing this on her, but there are alot of worse things and she can manage it by diet. Maybe this will be the wake up call her dad needs to maybe get tested. In the past he said he would rather be miserable than to give up things he loves. Sigh!

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

Celiac.com Sponsor (A8-M):


mommida Enthusiast
mommida
Posted

Not that anyone should have Celiac Disease wished on them.

Good to let your niece know the proper tests that should be ordered. She should know that celiac disease can hit at any stage of life and if she is negative now that may not be true for 30 years down the road. If she is positive then she has the knowledge to live a healthy life. Knowing how to treat celiac disease can help prevent a possible infertility issue too.

Roda Rising Star
Roda
Posted
  • Author

Not that anyone should have Celiac Disease wished on them.

Good to let your niece know the proper tests that should be ordered. She should know that celiac disease can hit at any stage of life and if she is negative now that may not be true for 30 years down the road. If she is positive then she has the knowledge to live a healthy life. Knowing how to treat celiac disease can help prevent a possible infertility issue too.

I know someday she would like children. You never know until you start trying whether or not you are able. I told her that it can be linked to infertility. I just hope she gets some answers. And she knows it isn't something you "get over" that you stay healthy by avoiding the gluten.

Looking for answers Contributor
Looking for answers
Posted

I'm so glad you are watching out for her and helping her to become more educated. I think she'll get the proper screening with your help. I can totally understand your frustration. I just read someone else's post on here yesterday that said his/her doctor gave her a handout that read: "while Celiac is a disease, gluten intolerance is a psychological disorder for those who need "control" over their food" or something to that effect. I couldn't stop thinking about that last night...it makes me shiver to think that there are doctors out there spreading that complete rubbish!

  • 1 year later...
Roda Rising Star
Roda
Posted
  • Author

Update on my neice. She ended up having a colonoscopy and they diagnosed her with colitis. They told her they would do the colonoscopy, and if it didn't show anything then they would test her for celiac. She never has had the blood tests done. I was home in June and I overheard her talking to her dad and mom. She is having issues again and she can't figure out why. Her mom was like, "it's just stress." She already has identified some foods that aggrivated her problem so she avoids them(she said chinese food really bothers her). She also mentioned that she had been avoiding wheat also before she came home for summer break. I guess she had been doing fine until coming back home and eating whatever. I really feel that she needs tested, but I don't know how she will take me suggesting it again. She still is seeing the same stupid doctors she was before and because of her continued problems have diagnosed her with IBS. I won't get started on what I think of that diagnosis!

Di2011 Enthusiast
Di2011
Posted

This makes me mad.

I avoided breakfast for 30+ years

I didn't like pizza

I didn't like pasta

and it goes on and on...

I really hope that you give this girl some support so she doesn't have 38 years of "okay" but actually feeling like crap

I know it is hard (my 9y/o son has the "gluten free is bad" already :(

Roda Rising Star
Roda
Posted
  • Author

She is a junior in college and, according to her, plans on going to grad school and enrolling in the Airforce ROTC program and then go active duty. Celiac would hinder that.. That won't stop me from mentioning it to her again.

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

Celiac.com Sponsor (A8-M):


Takala Enthusiast
Takala
Posted

That's a moot point, what her "plans" are, as she will be too sick to implement them by that time, anyway, if she's actually celiac or gluten intolerant and does not start eating like one.

Really no excuse not to get tested. Should fire her idiotic doctors while at it. Close relatives with celiac, relatives with celiac symptoms, and her symptoms, and no basic blood tests = medical incompetence.

Add to that if she's already avoiding certain food groups, she knows what her problem is, but is in denial.

bartfull Rising Star
bartfull
Posted

Don't these doctors have computers or books to look things up on?!! I own a music store, and if a customer comes in and mentions a brand that I'm not familiar with, I look it up. But these stupid doctors are dealing with our HEALTH. You'd think they'd care enough to at least do a little research when someone asks about a condition they are not familiar with. GRRRR!!!!

Roda Rising Star
Roda
Posted
  • Author

That's a moot point, what her "plans" are, as she will be too sick to implement them by that time, anyway, if she's actually celiac or gluten intolerant and does not start eating like one.

Really no excuse not to get tested. Should fire her idiotic doctors while at it. Close relatives with celiac, relatives with celiac symptoms, and her symptoms, and no basic blood tests = medical incompetence.

Add to that if she's already avoiding certain food groups, she knows what her problem is, but is in denial.

I couldn't agree more with you. I just hope it doesn't get that bad. She is so set in her plans because she wants the help with her mounting student loans. I told my mother that when the time comes they may not accept her anyway based on some of her health issues now.

Di2011 Enthusiast
Di2011
Posted

That makes me sad :(

If gluten is her problem and she dealt with it now just imagine the great things she could do with her life!

You really are between a rock and a hard place.

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. Florence Lillian
      - Florence Lillian replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      More cookie recipes ...thanks so much for the heads-up Scott. One can never have too many. Cheers, Florence.
    2. Russ H
      - Russ H replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting...
    3. cristiana
      - cristiana replied to Charlie1946's topic in Related Issues & Disorders
      15

      Severe severe mouth pain

      Hi @Charlie1946 You are very welcome. I agree wholeheartedly with @knitty kitty: "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis. I noticed it after standing in cold wind, affecting...
    4. Scott Adams
      - Scott Adams replied to lmemsm's topic in Gluten-Free Recipes & Cooking Tips
      13

      gluten free cookie recipes

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    5. Florence Lillian
      - Florence Lillian replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fermented foods, Kefir, Kombucha?

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) . I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,911
    • Most Online (within 30 mins)
      7,748
    AngieMcK24
    Newest Member
    AngieMcK24
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

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

  • Upcoming Events

  • Posts

    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
    • Russ H
      Severe severe mouth pain

      By Russ H · Posted

      Hi Charlie, You sound like you have been having a rough time of it. Coeliac disease can cause a multitude of skin, mouth and throat problems. Mouth ulcers and enamel defects are well known but other oral conditions are also more common in people with coeliac disease: burning tongue, inflamed and swollen tongue, difficulty swallowing, redness and crusting in the mouth corners, and dry mouth to name but some. The link below is for paediatric dentistry but it applies to adults too.  Have you had follow up for you coeliac disease to check that your anti-tTG2 antibodies levels have come down? Are you certain that you not being exposed to significant amounts of gluten? Are you taking a PPI for your Barrett's oesophagus? Signs of changes to the tongue can be caused by nutritional deficiencies, particularly iron, B12 and B9 (folate) deficiency. I would make sure to take a good quality multivitamin every day and make sure to take it with vitamin C containing food - orange juice, broccoli, cabbage etc.  Sebaceous hyperplasia is common in older men and I can't find a link to coeliac disease.   Russ.   Oral Manifestations in Pediatric Patients with Coeliac Disease – A Review Article
    • cristiana
      Severe severe mouth pain

      By cristiana · Posted

      Hi @Charlie1946 You are very welcome.   I agree wholeheartedly with @knitty kitty:  "I wish doctors would check for nutritional deficiencies and gastrointestinal issues before prescribing antidepressants." I had a type of tingling/sometimes pain in my cheek about 2 years after my diagnosis.  I noticed it after standing in cold wind, affecting  me after the event - for example, the evening after standing outside, I would feel either tingling or stabbing pain in my cheek.   I found using a neck roll seemed to help, reducing caffeine, making sure I was well-hydrated, taking B12 and C vitamins and magnesium.  Then when the lockdowns came and I was using a facemask I realised that this pain was almost entirely eliminated by keeping the wind off my face.  I think looking back I was suffering from a type of nerve pain/damage.  At the time read that coeliacs can suffer from nerve damage caused by nutritional deficiencies and inflammation, and there was hope that as bodywide healing took place, following the adoption of a strict gluten free diet and addressing nutritional deficiencies, recovery was possible.   During this time, I used to spend a lot of time outdoors with my then young children, who would be playing in the park, and I'd be sheltering my face with an upturned coat collar, trying to stay our of the cold wind!  It was during this time a number of people with a condition called Trigeminal Neuralgia came up to me and introduced themselves, which looking back was nothing short of miraculous as I live in a pretty sparsely populated rural community and it is quite a rare condition.   I met a number of non-coeliacs who had suffered with this issue  and all bar one found relief in taking medication like amitriptyline which are type of tricyclic anti-depressant.   They were not depressed, here their doctors had prescribed the drugs as pain killers to address nerve pain, hence I mention here.  Nerve pain caused by shingles is often treated with this type of medication in the UK too, so it is definitely worth bearing in mind if standard pain killers like aspirin aren't working. PS  How to make a neck roll with a towel: https://www.painreliefwellness.com.au/2017/10/18/cervical-neck-roll/#:~:text=1.,Very simple. 
    • Scott Adams
      gluten free cookie recipes

      By Scott Adams · Posted

      We just added a ton of new recipes here: https://www.celiac.com/celiac-disease/gluten-free-recipes/gluten-free-dessert-recipes-pastries-cakes-cookies-etc/gluten-free-cookie-recipes/
    • Florence Lillian
      Fermented foods, Kefir, Kombucha?

      By Florence Lillian · Posted

      I have had celiac for many years and still had terrible digestion. I cook from scratch, never eat anything with gluten ( A Gut that needs special attention seems to affect many who suffer from celiac) .  I made my own Kombucha, it helped my Gut much more than the yogurt I made but I still had issues. Water Kefir did nothing. As a last resort I made MILK Kefir and it has really started healing my Gut. It has been about 2 months now and I am doing so much better. It was trial and error getting the right PH in the Kefir ferment that agreed with my stomach, too little ferment, too much, I finally hit the right one for me. Milk Kefir has the most probiotics than any of the other. I can't find my notes right now but there are at least 30 probiotics in Kefir, Kombucha has about 5-7 and yogurt around 3 if I recall correctly.  I wish you all the best, I know how frustrating this condition can be. 
×
×
  • 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.