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
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,962
    • Most Online (within 30 mins)
      7,748
    AlissaW
    Newest Member
    AlissaW
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Scott Adams
      Does anyone here also have Afib

      By Scott Adams · Posted

      If black seed oil is working for his Afib, stick to it, but if not, I can say that ablation therapy is no big deal--my mother was out of the procedure in about 1 hour and went home that evening, and had zero negative effects from the treatment. PS - I would recommend that your husband get an Apple watch to monitor his Afib--there is an app and it will take readings 24/7 and give reports on how much of the time he's in it. Actual data like this should be what should guide his treatment.
    • Jacki Espo
      Covid caused reoccurrence of DH without eating gluten

      By Jacki Espo · Posted

      This happened to me as well. What’s weirder is that within a couple hours of taking paxlovid it subsided. I thought maybe I got glutened but after reading your post not so sure. 
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      Hi Tiffany. Thank you for writing your dituation and  circumstancesin such detail and so well writte, too. I particularly noticed what you wrote about brain for and feeling like your brain is swelling and I know from my own experiences that's how it feel and your brain really does swell and you get migraines.    Way back when I was in my 20s I read a book by 2 MD allergist and they described their patient who came in complaining that her brain, inside her cranium, was swelling  and it happened when she smelled a certain chemical she used in her home. She kept coming back and insisting her brain actually swelled in her head. The Drs couldn't explain this problem so they, with her permission, performed an operation where they made a small opening through her cranium, exposed her to the chemical then watched as she brain did swell into the opening. The DRs were amazed but then were able to advise her to avoid chemicals that made her brain swell. I remember that because I occasionally had brain fog then but it was not a serious problem. I also realized that I was becoming more sensitive to chemicals I used in my work in medical laboratories. By my mid forties the brain fog and chemicals forced me to leave my  profession and move to a rural area with little pollution. I did not have migraines. I was told a little later that I had a more porous blood brain barrier than other people. Chemicals in the air would go up into my sinused and leak through the blood brain barrier into my brain. We have 2 arteries  in our neck that carry blood with the nutrients and oxygen into the brain. To remove the fluids and used blood from the brain there are only capillaries and no large veins to carry it away so all those fluids ooze out much more slowly than they came in and since the small capillaries can't take care of extra fluid it results in swelling in the face, especially around the eyes. My blood flow into my brain is different from most other people as I have an arterial ischema, adefectiveartery on one side.   I have to go forward about 20 or more years when I learned that I had glaucoma, an eye problem that causes blindness and more years until I learned I had celiac disease.  The eye Dr described my glaucoma as a very slow loss of vision that I wouldn't  notice until had noticeable loss of sight.  I could have my eye pressure checked regularly or it would be best to have the cataracts removed from both eyes. I kept putting off the surgery then just overnight lost most of the vision in my left eye. I thought at the I had been exposed to some chemical and found out a little later the person who livedbehind me was using some chemicals to build kayaks in a shed behind my house. I did not realize the signifance  of this until I started having appointments with a Dr. in a new building. New buildings give me brain fog, loss of balance and other problems I know about this time I experienced visual disturbances very similar to those experienced by people with migraines. I looked further online and read that people with glaucoma can suffer rapid loss of sight if they have silent migraines (no headache). The remedy for migraines is to identify and avoid the triggers. I already know most of my triggers - aromatic chemicals, some cleaning materials, gasoline and exhaust and mold toxins. I am very careful about using cleaning agents using mostly borax and baking powder. Anything that has any fragrance or smell I avoid. There is one brand of dishwashing detergent that I can use and several brands of  scouring powder. I hope you find some of this helpful and useful. I have not seen any evidence that Celiac Disease is involved with migraines or glaucoma. Please come back if you have questions or if what I wrote doesn't make senseto you. We sometimes haveto learn by experience and finding out why we have some problems. Take care.       The report did not mention migraines. 
    • Mari
      My only proof

      By Mari · Posted

      Hi Jmartes71 That is so much like my story! You probably know where Laytonville is and that's where I was living just before my 60th birthday when the new Dr. suggested I could have Celiacs. I didn't go on a gluten challange diet before having the Celiac panel blood test drawn. The results came back as equivical as one antibody level was very high but another, tissue transaminasewas normal. Itdid show I was  allergic to cows milk and I think hot peppers. I immediately went gluten free but did not go in for an endoscopy. I found an online lab online that would do the test to show if I had a main celiac gene (enterolab.com). The report came back that I had inherited a main celiac gene, DQ8, from one parent and a D!6 from the other parent. That combination is knows to sym[tons of celiac worse than just inheriting one main celiac gene. With my version of celiac disease I was mostly constipated but after going gluten-free I would have diarrhea the few times I was glutened either by cross contamination or eating some food containing gluten. I have stayed gluten-free for almost 20 years now and knew within a few days that it was right for me although my recovery has been slow.   When I go to see a  medical provide and tell them I have celiacs they don't believe me. The same when I tell them that I carry a main celiac gene, the DQ8. It is only when I tell them that I get diarrhea after eating gluten that they realize that I might have celiac disease. Then they will order th Vitamin B12 and D3 that I need to monitor as my B12 levels can go down very fast if I'm not taking enough of it. Medical providers haven't been much help in my recovery. They are not well trained in this problem. I really hope this helps ypu. Take care.      
    • knitty kitty
      Does anyone here also have Afib

      By knitty kitty · Posted

      Fascinating.
×
×
  • 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.