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

Cedar Rapids, Iowa


missy'smom

Recommended Posts

missy'smom Collaborator

Can anyone reccommend a GP or GI in or around Cedar Rapids. I'm trying to help my sister into the University of Iowa Celiac clinic and get a biopsy.Last time she went into her GP and asked to be tested , he talked her out of it. She's more aware of her symptoms now. She says she needs a referrral. I told her to call U of I directly and ask them. In the meantime, I'll ask here. She's really not well and doesn't have much will to stand up for herself. Her friend had problems with a local GI and sis is concerned that if she can convince her GP to refer her, he'll send her to same one as friend.


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



Celiac.com Sponsor (A8-M):



sherylj Rookie
Can anyone reccommend a GP or GI in or around Cedar Rapids. I'm trying to help my sister into the University of Iowa Celiac clinic and get a biopsy.Last time she went into her GP and asked to be tested , he talked her out of it. She's more aware of her symptoms now. She says she needs a referrral. I told her to call U of I directly and ask them. In the meantime, I'll ask here. She's really not well and doesn't have much will to stand up for herself. Her friend had problems with a local GI and sis is concerned that if she can convince her GP to refer her, he'll send her to same one as friend.

Just want to say good luck,,,I know it is tough to find the right dr. But please don't give up.

chatycady Explorer

She does not need a referral, unless her insurance requires it. However, the Dr. that was in Iowa City and who established the celiac unit is now in Rochester at Mayo. Everyone loved him and said he was very good. I would recommend Mayo.

I am in Dubuque and the Dr's here don't know how to order the proper blood tests. (Celiac Panel)

The dietician at HyVee however was extremely helpful. She talked to me, gave me a food list, websites, and spent time looking at my food I had in my grocery cart. At least get her started on the diet. They have Hy Vee's in Cedar Rapids.

I hope the best for both of you and will pray for both of you. Let me know what you decide!

Chaty

missy'smom Collaborator

Thank you for the response and for your prayers. I talked with the University today and they said they need her to be referred. Also her insurance needs the referral. But I think I've gotten her to be willing to give it a good try again. She went through alot trying to get a diagnosis for seizures and never got one so had given up and accepted and lost hope. I'm trying to contact a support group in IA too to see if they can help.

Update: Before I posted my original post, I did a search her for Cedar Rapids and found an old post with support groups in IA listed. One was Waverly, far from her but I e-mailed them and asked if they had a contact for CR. I just got an e-mail back and they gave me the info. for a CR support group. Yeah! so, it sounds like we're on our way to finding a Doc. Thanks to whoever posted that list a while ago.

infiore Rookie
Thank you for the response and for your prayers. I talked with the University today and they said they need her to be referred. Also her insurance needs the referral. But I think I've gotten her to be willing to give it a good try again. She went through alot trying to get a diagnosis for seizures and never got one so had given up and accepted and lost hope. I'm trying to contact a support group in IA too to see if they can help.

Update: Before I posted my original post, I did a search her for Cedar Rapids and found an old post with support groups in IA listed. One was Waverly, far from her but I e-mailed them and asked if they had a contact for CR. I just got an e-mail back and they gave me the info. for a CR support group. Yeah! so, it sounds like we're on our way to finding a Doc. Thanks to whoever posted that list a while ago.

Hi! I am new here to the forum, my daughter has been diagnosed with seizures (she's 5) and a kinesiologist we took her to reccommended we take her off gluten. She has a pediatric neurologist we take her to and she is taking topamax for seizures (her seizure symptom is upward eye rolling). We had her tested for gluten intolerance through bloodwork but it didn't show her to be intolerant according to the levels. I would love to know if anyone else has had a similar experience and also I live in Waverly, IA- I wondered if anyone knew of any good doctors or support groups? I would love to take her off gluten in hopes of seizure control but even the ped neurologist says going gluten free won't help, as it only helps kids with autism.

Thanks so much!

missy'smom Collaborator

The contact for the support group in Waverly is rbbast@webiowaplus.net I found it by clicking on the Example search above and erasing tomato sauce and typing in waverly. There are other support groups listed for Iowa as well. The lady from Waverly responded quickly and was very helpful. Good luck.

Katydid Apprentice
Thank you for the response and for your prayers. I talked with the University today and they said they need her to be referred. Also her insurance needs the referral. But I think I've gotten her to be willing to give it a good try again. She went through alot trying to get a diagnosis for seizures and never got one so had given up and accepted and lost hope. I'm trying to contact a support group in IA too to see if they can help.

Update: Before I posted my original post, I did a search her for Cedar Rapids and found an old post with support groups in IA listed. One was Waverly, far from her but I e-mailed them and asked if they had a contact for CR. I just got an e-mail back and they gave me the info. for a CR support group. Yeah! so, it sounds like we're on our way to finding a Doc. Thanks to whoever posted that list a while ago.

Just thought I'd jump in here to let you know that Mary Greeley Medical Center in Ames, Iowa will do a celiac panel blood test for $20.00 with no doctor's referral. Perhaps if she can obtain a positive blood test, the doctor wouldn't be so resistent to ordering the biopsy. (or if she had a positive blood test maybe the medical center would refer her)

I can't believe these doctors! I had a friend who asked her GI for the celiac blood test because she had celiac symptoms. He refused saying "No, I'm the doctor here and I don't think you have celiac" She was very disappointed because he had been treating her for an intestinal infection and diverticulitis for months and she hadn't improved and was getting sicker and weaker by the day. She decided she didn't need his permission to go on the gluten free diet, so she did. She noticed drastic improvement in one week; and in a month she was starting to feel like her old self. When she reported this to the doctor his response was "It must just be a coincidence". The woman is in her early 70's and a year ago was too sick and weak to attend her own brother's funeral and today she the picture of health, constantly on the go; and has recently enrolled in some college classes.


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



Celiac.com Sponsor (A8-M):



missy'smom Collaborator

Thank you for the support and info. I'll pass it on.

Archived

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

  • 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. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    2. - par18 replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    3. - trents replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

    4. - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      6

      IBS-D vs Celiac

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      133,340
    • Most Online (within 30 mins)
      7,748

    Abbyyoung417
    Newest Member
    Abbyyoung417
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SilkieFairy
      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
    • par18
      Been off this forum for years. Is it that important that you get an official diagnosis of something? It appears like you had a trigger (wheat, gluten, whatever) and removing it has resolved your symptom. I can't speak for you, but I had known what my trigger was (gluten) years before my diagnosis I would just stay gluten-free and get on with my symptom free condition. I was diagnosed over 20 years ago and have been symptom free only excluding wheat, rye and barley. I tolerate all naturally gluten free whole foods including things like beans which actually helps to form the stools. 
    • trents
      No coincidence. Recent revisions to gluten challenge guidelines call for the daily consumption of at least 10g of gluten (about the amount in 4-6 slices of wheat bread) for a minimum of 3 weeks. If possible, I would extend that two weeks to ensure valid testing.
    • SilkieFairy
      Thank you both for the replies. I decided to bring back gluten so I can do the blood test. Today is Day #2 of the Challenge. Yesterday I had about 3 slices of whole wheat bread and I woke up with urgent diarrhea this morning. It was orange, sandy and had the distinctive smell that I did not have when I was briefly gluten free. I don't know if it's a coincidence, but the brain fog is back and I feel very tired.   
    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
×
×
  • 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.