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):
    GliadinX



    Celiac.com Sponsor (A1-M):
    GliadinX


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Would You Get Tested?


gfprof

Recommended Posts

gfprof Newbie

I've never put much faith in doctors, but after increasing GI distress over about a year and a half, I went to my doctor and complained that I thought I had a 'wheat allergy' (I didn't understand the difference at that point). She didn't do any testing, and instead gave me the 'eat more fiber' diagnosis along with the weird 'you get backed up and then it all comes out' explanation. (Hello: I'm having the opposite problem! Where do they get this stuff?) So I went wheat-free, then I was sick only when I ate out, then went gluten free for the last month, and I'm only sick when there's an accident (hidden ingredients, cross-contamination, etc.) This seems like a no-brainer to me, but friends and fam are pushing me to get tested. From lurking on this board, I understand that I have to eat wheat, get really sick, and be toilet- and bed-ridden for many days in order to do this.

Should I do it? Is it even worth it at this point? Has anyone ever had a 'verbal' diagnosis from a very understanding doctor? Am I ignoring another horrible possible disase?

Or should I just LIE to all of those well-meaning folks and say I've been diagnosed so that they'll leave me alone? :unsure:


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Holidaily Brewing Co.
Authentic Foods



Celiac.com Sponsor (A8-M):
Food for Life


Chicklet Rookie

I wouldn't and didn't. I too went on the gluten-free diet before any testing was done. I will not go back to eating gluten ever, I react strongly to accidents and that is enough proof for me. Not to mention when first going on gluten-free I felt better in 3 days. :D

Now you could find a doctor who knows about Celiac and Gluten Intolerance and he/she might just diagnose you from the diet reactions. :)

par18 Apprentice

Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck.

Tom

ravenwoodglass Mentor

Here is one possible way you may get your regular doctor to 'diagnose', if you have been ill and have been making frequent visits to your doctor and then he doesn't see you for a year or so and you walk in a different energetic person who has no complaints and then you tell him the only change was the gluten-free diet he may very well at least put gluten intolerant in your record. Doctors are becoming more aware of the drawbacks to the conventional testing, they can firmly rule celiac in but not out. The dietary response is the most important factor and you have that.

You might also consider being tested by Enterolab, they do fecal antibody testing and can also do genetic testing for the celiac genes. You doctor might diagnose based on the results of those tests and dietary response.

gfprof Newbie

Thanks everyone!

I feel so wonderful right now that I can't even imagine having to go through that. I think I'll take your advice about telling my doctor and maybe save a few people after me from the 'metamucil' prescription. ugh.

I will check out Enterolab too, so I can blame the parents later!

Ursa Major Collaborator

Good for you for staying on the diet. You know gluten makes you ill, and it is nobody's business what you eat or don't eat.

I was never officially diagnosed, but know that gluten is terrible for me. I am a very blunt person, beating around the bush is foreign to me. So, I tell people straight out that I can't eat anything containing gluten, and will not eat anything questionable.

I have no qualms when it comes to asking relatives to let me look at the ingredients of whatever spices, sauces etc. they have put into their cooking. If it is not safe, I won't eat whatever the questionable food is. I couldn't care less who might be offended. I refuse to be made sick by anybody's cooking.

Why do your friends and family want you to get tested? Who's body is it? Tell them that you are finally well, after being quite sick for a long time. You have no intentions of getting sick again only to confirm what you already know, namely that gluten makes you ill.

Your doctor had her chance of figuring it out and blew it. Why do people think that you have to be diagnosed by one of those doctors to justify being on the gluten-free diet? I think common sense is better than most doctors, especially when it comes to intolerances and diet. Doctors know precious little about nutrition and intolerances because very little time is spent on those subjects in medical schools.

The pharmaceutical companies control the medical schools, and they don't want people to be diagnosed with illnesses that don't require medication.

lucy lou Newbie
  par18 said:
Unfortunately I still believe the majority of the doctors out there don't understand the cause/effect of gluten intolerance enough to make a diagnosis based on diet response. That said I for one would like to have known that a diet change was a possibility for my years of symptoms. Even if I might not have gone or stayed on the diet at least I would have known the doctor was thinking it (Celiac) was a possibility. The only way I think real progress will be made as far as early diagnosis and treatment is if more people like yourself prove through diet response that your problem is related to something yhou are eating. I for one applaud anyone who has the knowledge and willpower to give the diet a chance and if successful be satisfied with the results and get on with their life. Whether you spend a lot of money on testing or "figure" it out for yourself the treatment is still the same. Good luck.

Tom

Very well said, Tom. I'm beginning to feel much the same way as you-that if you feel better eliminating gluten it makes sense to just pay attention to how your body responds. I am very weary of the unending search for a doctor that "gets it". Wish I could pin point what hidden food additives-especially at restaurants cause reactions. Any thoughts?


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):
Holidaily Brewing Co.
NutHouse! Granola Co.



Celiac.com Sponsor (A8-M):
NutHouse! Granola Co.


ksymonds84 Enthusiast

Hello and welcome to the board! If you decide to stay gluten free without testing, read over the mayo clinic's website on celiac. They state that a diagnosis can be made through a positive dietary response. They also say not to do this if you want further testing because it will be negative. I feel that the Mayo Clinic in Rochester MN is one of the top notch facilities in the US and if they will diagnose on dietary response alone then thats all I need to know. I do have a understanding doctor that diagnosed me after being impressed that all my gastro symptoms went away on a gluten free diet (except when I accidentally mess up which happens alot in the beginning!) but those docs are extremely hard to find. Your family will hopefully come around when they see how much better you are but you have all of us here on the board for support whenever you need us!

Archived

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


  • Celiac.com Sponsor (A19):
    Food for Life



  • Member Statistics

    • Total Members
      130,036
    • Most Online (within 30 mins)
      7,748

    Science Rocks
    Newest Member
    Science Rocks
    Joined

  • Celiac.com Sponsor (A20):
    Authentic Foods


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):
    GliadinX




  • Celiac.com Sponsor (A21):
    Little Northern Bakehouse



  • Upcoming Events

  • Posts

    • knitty kitty
      Welcome to the forum, @mytype1diabetes, Your statement that your daughter has become itchy and has hair loss made me think of iron deficiency.  Those were the same symptoms i had when I was iron deficient.  Was she tested for iron deficiency anemia at the time of her diabetes diagnosis?   Seems in the early stages of iron deficiency anemia, blood glucose levels can be falsely elevated.  Treating Vitamin D deficiency can also help immensely.  Vitamin D deficiency, iron deficiency, and deficiencies in the eight B vitamins, especially thiamine, can occur in Celiac disease.  Changes in stool can be caused by iron or thiamine deficiency. I was diagnosed with type two diabetes and had the...
    • Wends
       So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older...
    • trents
      Here is an article that gives an overview of all tests that can be used to detect celiac disease:    As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test...
    • Scott Adams
      I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether...
    • mytype1diabetes
      Hi all, Posting from the UK.  My 2 year old was recently diagnosed with Type 1 diabetes. In the UK they routinely screen for coeliac disease. The test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed. They...
×
×
  • Create New...