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

Physician Recommendation And Timing Question

Stagiary

By Stagiary
in Doctors

Recommended Posts

Stagiary Newbie
Stagiary
Posted

1) Can anyone recommend a family physician that I could see in the Virginia/West Virginia area that would provide a referral to a gastroenterologist?

2) How long do I need to be on a gluten filled diet in order to provoke measurable consequences?

I have been on a gluten free diet for two months. I did a food elimination diet to identify the foods that trigger my IBS. Somewhat ignorantly, I included gluten in the rotation of food substances that I eliminated. That was the first thing that made me feel better. I have been gluten free ever since.

After going gluten free, I immediately consulted my family physician, who believes based on the diet evidence that I have celiac disease. However, the doctor has been ineffective in getting an appointment with a gastroenterologist even though she agrees that such a referral is the right course of treatment.

Based on recommendations from this site, I contacted Sheila Crowe of UVA hospital, and her office indicated that they would accept me with a referral. Now, I am leaning on my family doctor's office to make that referral. Because my family physician doctor's office is dragging its feet, I may need to see another family doctor with greater motivation or resources. I live in Charleston, WV. I move to Washington, DC on August 5, 2006. I am happy to drive as far as Roanoke, Richmond, Louisville, Columbus, or Charlotte to get to a family doctor who will follow through on making referrals.

If I am able to get an appointment with a gastroenterologist, I want to be tested for celiac disease and receive accurate results as soon as possible. If I don't have celiac disease, I need to move on in my pursuit of feeling better. I want to be in testable condition on the day of my visit. So, for how may days/weeks prior to the visit should I eat gluten containing foods?

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

Celiac.com Sponsor (A8-M):


penguin Community Regular
penguin
Posted

3 months, eating the equivalent of 4 slices of bread a day to have a chance at getting reliable results. If the diet makes you feel better and your tests come back negative, however, be gluten-free!

eKatherine Apprentice
eKatherine
Posted
1) Can anyone recommend a family physician that I could see in the Virginia/West Virginia area that would provide a referral to a gastroenterologist?

2) How long do I need to be on a gluten filled diet in order to provoke measurable consequences?

I have been on a gluten free diet for two months. I did a food elimination diet to identify the foods that trigger my IBS. Somewhat ignorantly, I included gluten in the rotation of food substances that I eliminated. That was the first thing that made me feel better. I have been gluten free ever since.

After going gluten free, I immediately consulted my family physician, who believes based on the diet evidence that I have celiac disease. However, the doctor has been ineffective in getting an appointment with a gastroenterologist even though she agrees that such a referral is the right course of treatment.

Based on recommendations from this site, I contacted Sheila Crowe of UVA hospital, and her office indicated that they would accept me with a referral. Now, I am leaning on my family doctor's office to make that referral. Because my family physician doctor's office is dragging its feet, I may need to see another family doctor with greater motivation or resources. I live in Charleston, WV. I move to Washington, DC on August 5, 2006. I am happy to drive as far as Roanoke, Richmond, Louisville, Columbus, or Charlotte to get to a family doctor who will follow through on making referrals.

If I am able to get an appointment with a gastroenterologist, I want to be tested for celiac disease and receive accurate results as soon as possible. If I don't have celiac disease, I need to move on in my pursuit of feeling better. I want to be in testable condition on the day of my visit. So, for how may days/weeks prior to the visit should I eat gluten containing foods?

You say you want to receive "accurate results". What does that mean to you? There are false negatives, so a negative result will not rule out celiac. If your doctor tells you you do not have celiac based on the results of the tests he or she runs, will you go back to eating gluten in direct contradiction to your own observations of dietary response?

tarnalberry Community Regular
tarnalberry
Posted

3 months, 3 slices of bread a day.

BUT, a positive response on the diet IS a *very* valuable diagnostic, and most doctors who know much about celiac will tell you the same.

penguin Community Regular
penguin
Posted
3 months, 3 slices of bread a day.

BUT, a positive response on the diet IS a *very* valuable diagnostic, and most doctors who know much about celiac will tell you the same.

Yep, that's very true. I'm eating gluten now to have a biopsy done, but my GI doc said that I am at the very least intolerant, and that after the biopsy I have to be gluten-free regardless. I was gluten-free 4 months after inconclusive bloodwork and had a positive dietary response. I'm lucky though, my GI doc's wife has celiac and he goes to celiac conferences and seminars by Dr. Green. I've now had 3 doctors and a PA tell me that I'm intolerant, so make sure you find someone who knows what they're talking about.

Stagiary Newbie
Stagiary
Posted
  • Author

To me, "accurate results" means true positive or true negative and not false positive or false negative. I have felt a lot better on the diet, and that probably means I'll stick with it no matter how the test results come out. I can't do my job feeling the way I did before. I get paid to think and I can't think straight when I have gluten induced brain fog. I want to know for sure that this is the problem and the whole problem. If there's something else I can treat, I want to know that I should be looking for it.

In addition, I need more data in order to persuade my family to get tested. None of them has symptoms, and they are unlikely to go through the trouble of testing unless there's concrete evidence that they are at risk.

Finally, my husband only halfheartedly accepts that I have gluten intolerance/celiac disease. I want him to join me in accepting that I have it.

Thank you to all who responded. I appreciate your help. Please be well and take care.

FYI, I have an appointment with a gastroenterologist in 9/20. Hopefully, answers are near.

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    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

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • 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.