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

Left Doctors Appointment Feeling Perplexed....

Islandgirl

Recommended Posts

Islandgirl Newbie
Islandgirl
Posted
  • Author

WOW - So many replies! I'm going back in a couple hours to re-read them all & respond! Everyone - THANK YOU! I'm so glad to be here!

I have new news and I need everyones thoughts please!!!!!!! At the 1st doctors appointment, he asked specifically if I had dibetics and/or Crones in my families history - I'm not in touch w/most of the family regularly. Since my test came back negative & I've been pissy, this morning I made a couple of calls. I have diabetics, crones, IBS & severe colitis in several members on both sides of biological parents. Mom is colitis (bad - on several drugs not making a difference) and half-sister (we have the same mother) with 100% of the symptoms I had - she diagnosed w/IBS, on several Rx's none making a difference either. Maternal Grandmother had colitis, non-responsive to any colitis drugs and she died when I was about 15 y/old - so she must have been a fairly young woman.

Okay - the cheese that stands alone :huh: is now suddenly not thinking she needs a therapist - maybe just a new doctor???????

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

Celiac.com Sponsor (A8-M):


nora-n Rookie
nora-n
Posted

Hi

My daughter got an official diagnosis of celiac with both negative blood tests and biopsies.

And this is here in europe, where the government gives you money if you get a diagnosis. (about 200 dollars a month).

She was so symptomatic on gluten, and bor so much better off gluten,a nd had numerous other typical symptom, including graves disease. On a trial of gluten-free, her antibodies went away and she was no longer hyperthyroid.....

She also had these knives in the stomach.

During endoscopy, she could feel them taking biopsies right at hte spot where sha had had this knives-feeling.....

About those relatives, just what might happen if they try a gluten-free diet?

Have you read the work and background of Dr. Fine at enterolab?

His field of speciality was colitis, and that lead him on to gluten-sensitivity, and gluten-sensitive colitis.

nora

Islandgirl Newbie
Islandgirl
Posted
  • Author
About those relatives, just what might happen if they try a gluten-free diet?

Have you read the work and background of Dr. Fine at enterolab?

His field of speciality was colitis, and that lead him on to gluten-sensitivity, and gluten-sensitive colitis. nora

We've had several conversations since yesterday morning. I think they may get blood tested while they are still eating gluten. If they come up positive, that would be my diagnosis w/out my going back to Gluten for 3 months and re-test. I hope that's what they decide to do - waiting to hear today on that. Plus I have my re-check on Monday w/the doctor and now I have all this family history to fill him in on - anxious to hear what he says.

I have read a few blurbs about Dr. Fine here on the boards. I need to read this - where do I find it?

Last night - very strange. I was out of my regular whey protein powder & used some of DH Casein Protein powder and felt so bad about an hour later until bedtime! Stomach went into orbit and felt just like I did 4 weeks ago before I started Gluten-free. I've had this powder before & don't remember feeling bad, but I was still on Gluten back then. Casein is from milk & I don't recall ever having a problem w/milk before - does anyone have any ideas? All I had yesterday was the 2 protein shakes, some peanuts & almonds. :blink:

Islandgirl Newbie
Islandgirl
Posted
  • Author

Morning everyone! I was hoping to have several members thoughts on my newly learned family history. Everyones thoughts and ideas have been SO helpful to me this past week or so.

Anyone have the Dr. Fine link so I can read up on his endevors?

My follow up is tomorrow morning, I'm anxious to hear what he says with this family history I now found out about.

Everyone have a great morning & thankxs again!

aikiducky Apprentice
aikiducky
Posted

My thought is that your family really should get tested. :) Have any of them decided anything about that yet?

Pauliina

Fiddle-Faddle Community Regular
Fiddle-Faddle
Posted

Sounds like your whole family is at high risk for gluten intolerance!

I was just wondering about your reaction to the DH Casein Protein Powder--did you check the ingredients? Maybe it contained barley malt? Or wheat germ?

I don't have the Dr. Fine link, but I bet you could google him ("Dr. Fine celiac colitis")and come up with lots of info.

Islandgirl Newbie
Islandgirl
Posted
  • Author
My thought is that your family really should get tested. :) Have any of them decided anything about that yet?

Pauliina

Waiting for a call today from them - half-sister was out of town for a long weekend & being brought up to speed today is what I understand.
Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


hathor Contributor
hathor
Posted
I have read a few blurbs about Dr. Fine here on the boards. I need to read this - where do I find it?

www.enterolab.com

particularly: Open Original Shared Link

Open Original Shared Link

Open Original Shared Link

Dr. Fine's CV: Open Original Shared Link

There is also information at: Open Original Shared Link

Another article that may be of interest: https://www.celiac.com/st_prod.html?p_prodid=1417

empoweredmom Newbie
empoweredmom
Posted

Your reaction to casein is not so surprising . . . if you do the tests through Enterolab you will probably find out that you cannot tolerate gluten or casein (a milk protein that is very similar in composition to the protein structure of gluten).

This is my first reply to this group, however I have been reading everyone's stories for months - it is the only thing that has kept me from thinking that I am going crazy. My brother was diagnosed with Celiac a year ago through a biopsy. I didn't know much about the disease, so I started to do some reading. SURPRISE - I found myself connecting to many of the stories of people suffering atypical symptoms. I went on a gluten and casein free diet on January 1, 2007. Within 2 weeks I felt better than I have ever felt - I mean GREAT! I have lost 35 lbs in the last few months, still have 30 to go. It seems that I am one of those who GAIN weight with gluten intolerance. The psoriasis on my face and arms went away within two weeks of the diet change. I now know that I have been glutened because I get blisters on the inside of my nostrils that pop and scab over almost within 4 hours of the gluten intake. I could go on for hours with all the ways that the change in diet have helped me.

Based on my positive results with the elimination diet and my brother's positive diagnosis, I asked my children's ped to test them for Celiac. I got the typical "are you crazy" look and reaction from an uneducated health professional. She reluctantly ran the blood panel, and, as she suspected, it was negative. I proceeded to have them tested through Enterolab. My 3 year-old's results are back, and she IS gluten and casein intolerant, does not have full blown Celiac. We are waiting on my 7 year-olds results, however I anticipate that she is also gluten and casein intolerant based on past health issues. Both children have been on gluten and casein free diet since the day after we took their samples to be mailed to Enterolab. They are already showing the benefits of a 'healthy' diet for them. Their peditrician will not acknowledge the test results and thinks I am totally nuts to put them on a 'restricted' diet for 'no reason.' SHE obviously has not suffered from food intolerances as I have - why would I put my children through all the problems I have been through.

Anway, long post to say . . . stick with it. You are not crazy - you know how you feel when you do/do not eat certain foods. Learn to listen to your body, it will not steer you wrong. AND strongly encourage your family members to be tested. They are suffering needlessly.

Islandgirl Newbie
Islandgirl
Posted
  • Author

Wow - great postings! Empowered, Great for you! I'm so glad you changed your food and felt as great as I did. It was so dramatic for me that I swore it was a placebo effect - even though I really thought I'm way too anylistical to succum (sp) to a placebo effect - anyway...... I used someones saying here at the doctors office this morning... "You know medicine, but I know my body"....

So, this morning I got his PA - LOVED her - super nice gal. I retold my story of the last 9 months, added in my family history and she basically said... if it walks like a duck, talks like a duck.... you get the jist. She said that unless I REALLY wanted that scope test (which you have to be twighlighted for)and go back on Gluten for a minimum of three months, then I can just leave it alone as long as I'm feeling great. I really don't want that test nor can I imagine going back on gluten at all, let alone for three months. She said they are writting down that I am allergic to wheat in my file and for insurance reasons, that would be better than Celiac because if our insurance ever changes, I won't have a pre-exsisting condition to deal with. I asked her if there is any other thing out there that coud be wrong with me that by stopping gluten would make me 100% better & she said no. She said "We have our answer, but without a positive test to back it up, we're lisiting allergy."

I can live with that & DH seemed glad to hear that it wasn't in my head (???), meaning they said something conclusive (wheat allergy) and not your test was negative, so we don't know.

Empowered - I too have for the first time in my life, lost weight easily and been able to actually manage it the past 5 or 6 weeks almost without effort. It feels like my body just settled down and relaxed, like it was dog, dead tired and it just settled into a cozy recliner. I don't feel like I'm struggling anymore - like me and my body are on the same team finally - too weird????

I'm getting the blood tests faxed this afternoon - I'll update this when I get them in because ya'all know way more than I do about what that all means. And I have to look up what Entrolab does that the blood test doesn't - didn't I read it's a fecal test? How much does that cost? Will also look up the links this afternoon - Thankxs everyone - chat more this afternoon!

Archived

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

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


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • 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 .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.