Get email alerts Get Celiac.com E-mail Alerts  




Celiac.com Sponsor:
Celiac.com Sponsor:




Ads by Google:






   Get email alerts  Subscribe to FREE Celiac.com email alerts

Awaiting Results!
0

8 posts in this topic

Hey there so after all the encouragement I got the other day I made an appointment went in and basically told my doctor to shut up and listen... maybe not quite "shut up and listen" but words to that effect.

I sat and read through everything and explained it all in what I'm almost certain was excruciating detail for him haha! He then responded with a barrage of questions some of which baffled me some what! "how easily do you bruise" my honest reply was "eh?" Then he spied the bruise from my previous blood test and his exact words were "holy cow! that's just from a blood test?" haha

Any way the questioning continued and he asked if I had any idea as to what I thought was going on so I told him about the conversation with my work colleague and he said that now he's got a full picture of everything he was going to do some more specific blood tests. He pulled the blood results that had been taken previously and babbled a bunch of medical talk and on seeing my bewildered face explained in plain English thank God!

It turns out that I am anemic, vitamin D and C deficient and have elevated levels of something or other in my liver. (apologies for the lack of liver info if I'm honest I was still trying to make sense of the babbling that he did previously) Whatever is going on there isn't serious though.

So he rattled through some more questions diet, exercise etc etc and finally sent me through to the nurse. After the bloods were taken he was quite intrigued to watch my arm bruise up. Even though the pinprick was TINY the bruise is unbelievably black/purple! He then went on to explain that what I am experiencing is "almost certainly coeliac" and commiserated + apologized for having missed it before. So the blood tests have been sent away and he said depending on the results I may have to have the biopsy done.

QUESTION - Should the biopsy be done regardless of the result. The way he was talking was that if it was positive he would not do it?

He then concluded the visit by saying "young lady, you have my full permission to go and eat as many McDonalds and other gluten offending foods as those days are likely to be coming to an end!" For as much as I understand the seriousness of the illness I can't help but feel that he was being pretty lighthearted with it all and the attitude he approached the whole subject with was refreshingly humorous!

I am also to carry on eating as I would normally until the results come back. These are expected to come in on Monday or Tuesday (which seems pretty quick!)

So until then what can I do to stop these stomach cramps dizziness and sighing/inability to catch a breath? Because I am currently unable to sleep even though its 02:11 AM. I'm also sat on the sofa, with my laptop on the floor typing this since I can't bring myself to sit up straight!

Thank you all again for your kind words the other day <3

0

Share this post


Link to post
Share on other sites


Ads by Google:

Renee... Good for you... Hopefully, your actions will get you the answers you are looking for...

I would like to say, though, that his cavalier attitude (McDonald's) at the end is just another example of how completely "ignorant" the medical community is regarding food/autoimmune issues... Not "stupid"..."ignorant"... Sad...

0

Share this post


Link to post
Share on other sites

Tell us where you are again - different countries may have different answers for the biopsy question.

0

Share this post


Link to post
Share on other sites

Tell us where you are again - different countries may have different answers for the biopsy question.

Im in Edinburgh, Scotland, UK. Hope this helps?

0

Share this post


Link to post
Share on other sites

Renee... Good for you... Hopefully, your actions will get you the answers you are looking for...

I would like to say, though, that his cavalier attitude (McDonald's) at the end is just another example of how completely "ignorant" the medical community is regarding food/autoimmune issues... Not "stupid"..."ignorant"... Sad...

Totally agree! I know that the minute I go and eat something like that I'm going to be on the sofa or in my bed regretting it!

0

Share this post


Link to post
Share on other sites




Unfortunately, the only way you're going to make the digestive problems go away is to go gluten free, and your sighing/difficulty breathing is probably caused by your anemia. Besides iron anemia, is there any chance that you might also be Vitamin B-12 deficient? How did he address your nutritional deficiencies? Did he suggest that you take vitamins and iron? If you have celiac, you probably won't be able to absorb them right now....but he should have offered to provide you with intravenous iron or even iron injections.

No matter what your blood test results are, you should ask him on Monday how he intends to deal with your nutritional deficiencies, which should be tended to immediately.

0

Share this post


Link to post
Share on other sites

Please be prepared that you still may have negative blood tests. It doesn't mean you don't have a problem with gluten, and it doesn't mean you aren't celiac. But blood tests miss 30% of celiacs...they just aren't that good yet. Please don't let your doctor tell you that gluten can't be your problem.

As for endoscopy...positive bloodwork is just that...positive for celiac. The endoscopy isn't necessary to dx usually, but a lot of doctors don't trust the bloodwork and insist on endoscopy. Also, it isn't a bad idea to see what all is going on in there. You can have other issues coexisting with celiac. So it is really your call. But you do have to keep eating gluten up until the endoscopy because villi heal really quickly in some people, and an endoscopy that looks good, or even one that doesn't quite SCREAM celiac, will make a lot of doctors refuse a celiac dx.

0

Share this post


Link to post
Share on other sites

I had positive ttg IgA and EMA tests. Together they can only indicate celiac disease... actually, apart they almost assure it is too. lol Anyway, my doctor didn't want to pursue the biopsy because, frankly, there was no point.

I can understand requesting a biopsy if you need to be sure it's celiac IF you end up with (false) negative blood tests, which as others have said, happens almost 1/3 of the time. If you think you might want a biopsy, you will have to continue to eat gluten until you have the test.

I'm afraid I have no idea how to relieve your symptoms except to suggest 3 mg of melatonin about 30 minutes before bed and it will help you fall asleep a bit easier when your mind is racing with thoughts of celiac... I know it's tough to de-stress when getting tested. Best wishes.

0

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now
0

  • Forum Statistics

    • Total Topics
      104,374
    • Total Posts
      920,569
  • Topics

  • Posts

    • Today was the big day when I went to the GI and this is the first time I have felt heard about and well taken care of.  I told him about the two celiac blood tests  (in my first post) normal, he said that often happens, even with people who do have celiac and he needed to see the report and pictures from my endoscope.    I had filled out the appropriate Kaiser paperwork for Sutter to send all my medical records, but they ended up sending a celiac disease to me with the records, which Sutter said they could not use.  We also talked about gluten sensitivity v. celiac, and he said a lot of people are sensitive to gluten even if they don't have celiac. He said that my symptoms sound like classic IBS, which can be caused by any number of things.  He asked if I would try the FODMAP diet, which limits certain foods and requires no gluten due to what being He said my symptoms sound like classic IBS, which he said can be caused by any number of things, including gluten sensitivity.  He has asked if I would try the FODMAP diet, which has restricted foods as well as no gluten because most gluten products have wheat in them.  So, since I am planning on going gluten free anyway, and I don't want another endoscope or blood tests if absolutely necessary, I am going to try the FODMAP diet and see what happens. I filled a consent form at the GI office today to have all my records sent to him so he can view the endoscope pathology report and photos.  I have an appointment with a Registered Dietician on September 30, and follow up appointment the GI in 4 months. 
    • gluten-free andee, according to an article on celiac.com  that talks about this subject see this link http://www.celiac.com/articles/24406/1/Celiac-Diease-and-Other-Autoimmune-Diseases-Equals-Low-Inflammatory-Diet/Page1.html Quoting the author "In the author's personal experience, a gluten-free diet has many limitations. The reactivity between alpha gliadin and corn, millet, oats, rice and dairy has been denounced as invalid by gastroenterologists and celiac disease researchers. While at a medical school in Missouri, biopsies did not show improvement in villous atropy until all alpha gliadin sources and corn, millet, rice and oats were removed from the diet."  Note this research is two years old but hilites the problem with non-gluten rice protein that you are having. It is the alpha gliadin sources that it causing the cross reactivity you are experiencing when you eat rice protein's. She says quoting "Celiac disease has gotten the most attention in antibody research, but the current data on cross-reactivity of antibodies is allowing a better understanding of gluten sensitivity. Antigen reactivity to alpha-gliadin can trigger immune attacks on many individuals beyond those with positive DQ 2, DQ 8 and TTG test results. She goes on to say "A low inflammatory diet customized to each person through testing for cross-reactivity or elimination diet protocols is needed to restore a state of health and well-being."  which sounds exactly like what you are doing. If you are still having problems after elminating rice a 30 day elimination of all the alpha gliadin proteins might be in order.  Corn is a common reactivity problem I hear with a gluten allergy from my friends as well as the obvious lactose problems that can be common among celiacs.  But rarely do you hear Rice allergy's brought up in context of a gluten allergy. I am glad you are making progress on finding your triggers. Read the whole article for yourself to see if there are nuggets of truth I did not highlight in my response. I hope this is helpful. Good luck on your journey to health. Posterboy,
    • One other thing - you might be able to tolerate some dairy if it's only the FODMAPs problem. I discovered that many cheese such as cheddar have effectively no lactose. And my wife sometimes makes 24 hour yoghurt, which also has effectively no lactose. Those have been fine for my tummy.
    • I'm new to the forum, so this topic may already have been covered....please forgive me, if that's the case.  I am in the beginning stages of guiding the development of a 504 plan to file for my 6th-grade daughter who was diagnosed with Celiac Disease 2 weeks ago. The diagnosis was made with a biopsy. My first question...A 504 is what's necessary....not just the IHCP, correct or no? I have the Physician's Statement & the Medical Evaluation report from our GI specialist. What else do I need to have at the ready? The team has requested we go ahead and write the IHCP & then include it with the 504.  And my second question...What accommodations have others found relevant to include on the IHCP  & 504? I just watched a 504-Plan webinar I found on this forum & it recommends the following: -access to gluten-free food in classroom & cafeteria - excused absence from activities that use gluten-containing foods or materials -  prevent cross-contamination in school food service - use of microwave to heat personal meals -  bathroom priveleges Is there anything I need to consider adding? My daughter does prefer eating school meals rather than packing a lunch from home & I am concerned about special events, overnight field trips etc. My learning curve is steep. What am I missing? Teach me, please & thanks so much! This forum has already helped me tremendously these past few weeks.
    • SIBO, microscopic colitis, probably celiac here (celiac's a self diagnosis, was gluten-free before getting tested). Now my doctor is suspecting hashimoto's due to low heart rate, so getting tested for that probably tomorrow. Anyway, I feel your pain... Low FODMAPs on top of gluten-free is tough. One thing that has helped me a lot is betaine HCl with meals. I can actually eat some onions, garlic, and fruit again with much less trouble. Make sure you get a safely gluten-free brand. Country Life is certified gfco, so is tested to less than 5ppm and is what I take. Good luck!
  • Upcoming Events

  • Blog Entries

  • Recent Status Updates

  • Who's Online (See full list)

  • Member Statistics

    • Total Members
      61,450
    • Most Online
      1,763

    Newest Member
    Chellygirl
    Joined