Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Pre-diagnosis Stuff


MIddings

Recommended Posts

MIddings Newbie

I tried to respond to someone else's post but it appears to have sent it to the person and not posted it to the board.

I have about a dozen of the symptoms of Celiac plus the complication of severe osteoporosis.

The symptom that finally sent me over the edge was canker sores. I had them repeatedly for four months before I decided maybe a gluten free diet would help. I started the diet on Sat a week ago and the cankers all healed within three days. I stopped having pain/cramping with BM's. I stopped feeling bloated. I have more energy.

Here's my dilemma. Is it imperitive that I go through all the tests to confirm Celiac? If eating this way makes me feel better what is the point?

Then again, if I were hospitalized, would anybody listen to me if I tried to tell them I couldn't eat certain things if it is not documented in my medical record?

What are the benefits to being diagnosed by the medical establishment as opposed to just listening to your body and knowing what you need to stay away from?

Is the diagnosis important so that people don't think you are off your rocker for being so "picky" about your foods? Is it a way to feel validated when people question you?

I am just really confused as to whether I should pursue a diagnosis or not. I am trying to figure out what the benefit vs risk is worth.

I think I will go talk to my doctor about it and get his take on the whole thing. But I would like to hear your thoughts on this.

Even if I did get tested and say the tests actually came back negative, I'd still stay on the diet knowing how much better I feel this way.

Marsha


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



Celiac.com Sponsor (A8-M):



plantime Contributor

Talk to your doctor. If your doctor will accept the results of the diet (like mine did), then have your doctor write it in your chart. The drawback to official diagnosis is insurance: if you have to change companies, then the new company cna claim pre-existing condition and not cover you. It lends validation to your diet, and gives closure to those who have been searching for so many years for answers. How important it is to have a diagnosis depends on you, and what you want. You have to be consuming gluten for the blood tests and biopsies, and are still not guaranteed a correct dx. Are you willing to go through that for a couple of months? You just have to talk to your doctor, and decide what is best for you.

lauradawn Explorer

I personally had the blood work done, which came back strongly positive, and decided not to have any biopsy's done. I felt like, a diet would give me strong enough indication as to if I truly felt better or not. We weighed the pros and cons and decided that there were little pros for us, and cons included invasive procedures, the risk that results could come back negative (which we would likely not trust) costs for the procedures and lab work, and permanet records of Celiac. Sometimes these are not all bad, but it's what we came up with when trying to decide what to do. It is a hard decision. If you would like something but not neccessarily all of it.... you could find someone to do the blood work and see what happens. That takes no time at all, and if you are already established with a Dr you might not have to wait either. Just an idea.

MIddings Newbie

I decided to write a letter to my doctor. Here it is:

Dear......,

As you will remember, I have been to see you several times over the last couple of months complaining of reoccurring canker sores in my mouth, some of them have been quite large. I have had trouble with this since the 3rd week in December. We tried switching from Vioxx to Celebrex with no results. I tried going without the NSAIDS for at least a week with no results. You gave me Valtrex to try and it never helped either. As a last resort you talked of sending me to a dermatologist.

I have been doing research on my own on the causes of canker sores. When I read about Celiac, I was surprised to find that I have at least 13 of the symptoms they list for this disease as well as severe osteoporosis which is listed as a complication of Celiac. Of the symptoms that are listed for this disease, I have been experiencing the following....

Abdominal pain.... Reoccurring

Abdominal bloating.... Reoccurring

Foul-smelling stool.... all the time

Gas...reoccurring

Iron deficiency.... Recently diagnosed

Fatigue.... most of the time

Joint pain.....comes and goes

Muscle cramps....comes and goes

Canker sores......almost constant since Dec.

Skin rash.....comes and goes....it appears on the back of my neck suddenly....burns and

itches and puffs up like a severe burn and lasts for several days and disappears

Indigestion.....occasional

Constipation......reoccurring

Hypoglycemic episodes......reoccurring

Osteoporosis.....severe

I decided to try the gluten free diet for celiac to see if it would make any difference....mainly to the canker sores since this was the most troublesome symptom to me. The abdominal symptoms I have had for years since I was a child, but I never said anything about it to anyone because I just thought that was normal.

After three days on the gluten free diet the canker sores have all healed and I have not had any new ones show up. As of this writing it has been eight days. Not only have the canker sores stopped, but I no longer have the abdominal pain, bloating and gas and I have more energy than I used too.

I realize there are tests that can be done to confirm Celiac. But I also realize a person needs to be consuming gluten for them to turn out right. I am feeling so much better eating this way that I hate to mess myself up just to be able to confirm the diagnosis of Celiac. However, if you know how to do the blood tests or know that the local labs here will process them, I would be willing to eat gluten foods for a short time and have the blood work done. I really do not want to do the small intestinal biopsy though and my husband is really discouraging me from having it done. He doesn

plantime Contributor

Looks good! I hope he accepts the diet, since it is a scientific way of measuring something!

the2ofus Rookie

Hi Marsha,

If you are going to have the blood test done do it with prometheus labs in California. They are supposed to be the most accurate in the country. If you order the test as a comprehensive celiac test they will do a gene test if you other results are negative. Then you would atleast know if it is a possibility. My insurance company approved going there because the local labs do not do the gene test. You can call them and they will send you a postage paid kit to send your blood back to them in. 888-423-5227 www.prometheuslabs.com.

Good luck

Robin

wildones Apprentice

I think your letter to your doctor is great ! It says everything he needs to know to come to the same conclusion that you have. I have seen several time on this board that some people are concerned about being 'officially diagnosed' in case of future hospitalizations. If you are not conscious or aware enough to talk, then you won't be given any foods right ? You would not be force fed any foods against your will right ? If you are well enough to eat, then you are well enough to tell the nurses/doctors about your dietary requirements.

I can't imagine that anyone would require proof of gluten intolerance or celiac disease in order to accomadate your needs. My son has had many hospitalizations, and has a long complicated medical history. He has been to many ERs also, and we have never been required to 'prove' anything about his history.

Hope you continue to feel well and enjoy your gluten-free eating !

Lorraine


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



Celiac.com Sponsor (A8-M):



concernedlady Rookie

Dear Marsha,

You can have your (gluten-free) cake & eat it! You could have a non-invasive stool sample test done, for gluten intolerance, and this stool sample testing can be done WHILE you are gluten-free, and it can be done even a month or more after you've been gluten-free.

See Dr. Kenneth Fine's "EnteroLab" website, about his innovative, reliable, non-invasive testing. Dr. Fine is a credentialed gastroenterologist, who himself has a gluten intolerance (as does his daughter). Here'a a link: Open Original Shared Link

Many people on this forum here, have had EnteroLab testing, and it usually validated their decision to go gluten-free.

Sincerely,

Carol

Open Original Shared Link

plantime Contributor

Wildones, In the event that you are unconscious or unable to communicate for an extended length of time, you WILL be given a "food packet" intravenously. You will not be allowed to starve to death. If no one around you knows that you cannot have certain things, then you will get what you might not be able to have. I do not know how the IV administration would do in regards to the intestinal villi, and I have no desire to find out the hard way!

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,182
    • Most Online (within 30 mins)
      7,748

    Portia
    Newest Member
    Portia
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      First, welcome to the forum, @boy-wonder! Second, a little clarification in terminology is in order. Granted, inconsistency is rampant when it comes to the terminology associated with gluten disorders, but it has more or less become settled in this fashion: "Gluten intolerance" is a general term that car refer to either celiac disease or NCGS (Non Celiac Gluten Sensitivity). "Gluten Sensitivity" is the shortened version of NCGS. Third, Celiac disease is not an allergy to gluten. It is an autoimmune disorder characterized by gluten ingestion causing the immunes system to attack the lining of the small bowel, causing damage to it over time due to the constant inflammation that wears down the "villi" (mucosal finger-like projections that make up the lining). Over a significant period of time as gluten continues to be consumed, this generally results in impaired nutrient absorption. There are specific blood antibody tests available to check for celiac disease but the testing will not be valid while on a reduced gluten diet or a gluten free diet. Those already having having begun a gluten free diet must go back to consuming generous amounts of gluten for a period of weeks if they wish to pursue testing for celiac disease. Fourth, NCGS shares many of the same symptoms of celiac disease but does not damage the lining of the small bowel as does celiac disease. There is no test for it. A diagnosis for NCGS depends on first ruling out celiac disease. It is 10x more common than celiac disease. Some experts feel it can be a precursor to the development of celiac disease. Eliminating gluten from your life is the antidote for both. Fifth, you state that you are convince you don't have celiac disease by are just "gluten intolerant" (aka, gluten sensitive). How do you know that? It seems to me you are making a dangerous assumption here. I suggest you consider getting formally tested for celiac disease.
    • AllyJR
      Has anyone found a gluten free parakeet seed mix? I can't find a single one! My doctor wants me to make sure all pet food in the house is gluten free but I'm not sure if that's even possible with parakeets. We love our birds so much! I'm wondering if anyone has ever made their own bird seed mix if gluten free ones are not available. 
    • boy-wonder
      Hi, new member. About me, I had been suffering with weight gain, bloating and irregular and extreme bowel habits for a year or so. For example, I went on holiday in 2023, then again I  2024 at the same time of year and every shirt I wore in 2023 didn't fit anymore, couldn't even do the buttons up. Being in my mid 50s I put it down to age and middle aged spread. I'd been lucky all my life having good metabolism and being able to eat anything and as much as I like without putting on any weight, it drove my other half mad. Over a conversation with a friend health and age Related stuff came up and he mentioned someone he knew who had recently found out they were gluten intolerant,  I looked it up and had every one of 8 or so symptoms listed. Bloating,  weight gain,  headaches, brain fog,  constipation, etc etc. I took the decision to give going gluten free a try. Within 1 week I had lost 4 lb, now 7 weeks in I've lost 13 lb. I feel much better in general,  the bloating has severely subsided, it used to keep me awake at night as I felt so uncomfortable.  So pretty much a success story, as everyone here knows,  going gluten free isn't always easy, and eating out can be awkward,  but I consider myself lucky that I appear to have an intolerance rather than an allergy or being celiac.  I can deal with most of the gluten free options at the supermarket but, the big one for me is bread, I love bread, and the gluten free options I've tried are pretty poor. I was at a posh black tie event last night and chose all the food options I thought would be gluten free,  however,  there was bread on the table and I couldn't resist it, I had I small piece of bread,  god it was good, I wanted more but I resisted. Today I feel a bit dodgy, my stomach is churning, and I generally feel a bit urgh.  So here's the question, is that really down to 1 small piece of bread or is it coincidence?  I'd be interested in hearing how other people have reacted to a similar situation,  as I was considering having a day off every now and then and enjoying some lovely fresh bread.
    • ValerieC
      Does anybody know of a guide that ranks reevaluates universities and colleges in terms of their accommodation of celiac disease or food allergies?   Thanks in advance for any leads! Valerie 
    • thejayland10
      thank you, i have been doing that the last few weeks and will continue to do so. I had not had my ttg iga checked since I was diagnosed 14 yrs ago so I am not sure if they ever dropped below the 15-20 range.    all my other labs are completely normal but I am concerned that this may be signs of refractor celiac or something else since I'm so careful with gluten-free diet 
×
×
  • Create New...