• Ads by Google:
     




    Get email alerts Celiac.com E-Newsletter

    Ads by Google:



       Get email alertsCeliac.com E-Newsletter

  • Announcements

    • admin

      Frequently Asked Questions About Celiac Disease   09/30/2015

      This Celiac.com FAQ on celiac disease will guide you to all of the basic information you will need to know about the disease, its diagnosis, testing methods, a gluten-free diet, etc.   Subscribe to FREE Celiac.com email alerts What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease? - list blood tests, endo with biopsy, genetic test and enterolab (not diagnostic) Celiac Disease Screening Interpretation of Celiac Disease Blood Test Results Can I be tested even though I am eating gluten free? How long must gluten be taken for the serological tests to be meaningful? The Gluten-Free Diet 101 - A Beginner's Guide to Going Gluten-Free Is celiac inherited? Should my children be tested? Ten Facts About Celiac Disease Genetic Testing Is there a link between celiac and other autoimmune diseases? Celiac Disease Research: Associated Diseases and Disorders Is there a list of gluten foods to avoid? Unsafe Gluten-Free Food List (Unsafe Ingredients) Is there a list of gluten free foods? Safe Gluten-Free Food List (Safe Ingredients) Gluten-Free Alcoholic Beverages Distilled Spirits (Grain Alcohols) and Vinegar: Are they Gluten-Free? Where does gluten hide? Additional Things to Beware of to Maintain a 100% Gluten-Free Diet Free recipes: Gluten-Free Recipes Where can I buy gluten-free stuff? Support this site by shopping at The Celiac.com Store.

Some Help Please...
0

14 posts in this topic

So, after 3 days of ALMOST no gluten I decided I want to get tested to find out for sure if that is really what is wrong with me.

I understand that one needs to be eating "normally" including gluten for the test to work correctly, so I ate what I would "normally" eat last night, almost imediately I had bad gas and a little while later had diarreah, then again this morning had diarrea.

The 3 days prior when I was having very little gluten I was fine, I am wondering if getting the test done is worth putting myself through this.

I am finding this very difficult to deal with.

0

Share this post


Link to post
Share on other sites
Ads by Google:
Ads by Google:


You should be able to get the blood test pretty quickly. Unless you have to fight with your doctor to get it ordered.

You can always go gluten-free with no test because you know you feel better.

Good luck & Welcome!

0

Share this post


Link to post
Share on other sites

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

0

Share this post


Link to post
Share on other sites

Yes I agree with Karen. You have not been gluten lite for very long so I don't think you need a 3-month gluten challenge. With only 3 days "almost gluten-free" you will not have healed enough to get rid of any damage anyway. Get into see your dr. You should be able to get the blood tests done immediately on the same day as your appointment.

0

Share this post


Link to post
Share on other sites

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

1

Share this post


Link to post
Share on other sites
Ads by Google:


Ok. I'm back. Print this off. Highlight the names of the blood tests. It's from an actual medical center and actual docs so my doctors have read it. Make sure he doesn't just write "celiac panel". Ask him to specify because some Celiac panels are out of date. Keep a copy with you. When you are getting the blood drawn, make sure those are what they are sending the blood in for.

http://www.celiacdisease.net/assets/documents/2011CDCFactSheets_AnitbodyBloodTests.pdf

Another good site:

http://www.celiacdiseasecenter.columbia.edu/CF-HOME.htm

0

Share this post


Link to post
Share on other sites

Joe, I think you should eat gluten until the endoscopy. Make sure they take many biopsies of the small intestine. I'm going to look for some info you can print & take with you. Back in a few minutes!

thank you so much...is the upper GI the same as an endoscopy?

0

Share this post


Link to post
Share on other sites

thank you so much...is the upper GI the same as an endoscopy?

Make sure it isn't just the esophagus & stomach. Ask the doctor. You could probably call & ask the office if that is what you are scheduled for. When you get there, they will ask if you know why you are there, any questions, etc. Make sure you are getting what you think you are.

0

Share this post


Link to post
Share on other sites

thanks...I have the blood tests tomorrow, the Dr. told me that there is not just a specific test to find out if you have Celiac, is this true???

He is sending me for a bunch of bloodwork tomorrow and an upper GI on May 17th, do you think i need to continue eating gluten until may 17th or does that not have anything to do with an upper GI.

Thanks again.

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

1

Share this post


Link to post
Share on other sites

Yes, do keep eating gluten until May 17th if you can handle it. I'm not sure what your dr meant when he said that about their not being specific tests...there are specific tests (Kareng posted links above), HOWEVER the tests cannot rule out celiac. They are designed so that if they come back positive it's very, very, very accurate. If it comes back negative it could be a false negative. In other words you can have a negative test resutl and still have celiac. so perhaps that is what your dr meant abotu them not being specific. Be sure to eat gluten until all your testing is done because not eating gluten can cause your test results to be false negative.

ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

0

Share this post


Link to post
Share on other sites

ok, I will print those off and bring them to the Dr.'s with me, I can't thank you enough.

I cannot emphasize enough that you should highlight the actual tests. Docs will read about 2 sentences and they are used to someone highlighting the important parts or where to sign.

1

Share this post


Link to post
Share on other sites

As painful as it might be you really need to keep eating gluten until the endo is done. As was stated there are false negatives with testing. Do listen to your body and go gluten free as soon as the testing is finished you don't need to wait on the results. Your body is really giving you the answer and do keep in mind that once you are 'officially diagnosed' you will have celiac as a preexisting condition. Some have had trouble getting insurance with a formal diagnosis. Not saying for sure that you will have to deal with that issue but something you should be aware of. We don't need a doctors permission to be gluten free but having a diagnosis can help get doctors to order tests like vitamin and mineral panels and scans to check for osteoporosis.

2

Share this post


Link to post
Share on other sites

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

0

Share this post


Link to post
Share on other sites

ok, I assume getting an endoscopy at the same time as an upper GI would be my best bet.

I live in Canada, and therefore don't pay for medical visits, do you think I can tell the doctor what I want done?, all he is sending me for is the upper GI, I will tell him that I want the endoscopy, does he have to listen?

Explain to the doctor what your issues have been and tell him that you did a short trial of the diet and that it relieved your symptoms. Tell him that you are aware that to be tested for celiac you need to still be on gluten and tell him how awful you felt when you added it back in. Then tell him you want to be tested for celiac. It depends on the doctor whether he will listen or not. Being in Canada, from what I have heard here on the board, it can take awhile to get scheduled for an endo. It is up to you whether you want to wait for the test to be done or if you just want to go ahead and go gluten free without the endo after the bloodwork is done.

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
      106,465
    • Total Posts
      930,718
  • Member Statistics

    • Total Members
      63,893
    • Most Online
      3,093

    Newest Member
    Jihoca
    Joined
  • Popular Now

  • Topics

  • Posts

    • I was at a used book sale yesterday and happened to see an old dermatological textbook.  Of course the first thing I looked up was dh just to see what it had to say.  What I read shocked me as well as scared me half to death. The description of dh was right on, severe itching, blistering, bilateral, arms/elbows etc. but there was no mention at all of celiac, wheat, gluten or anything along that line.  The reason they gave for the cause of dh was "a manifestation of an internal cancer," and later it said it results from cancer, usually cancer of the ovaries or one other that I can't remember.  Being a hypochondriac, this was about enough to put me into cardiac arrest. I looked at the publication date and it was printed in 1963 which really isn't all that far back.  Has anyone else ever heard of this?? I thought by 1963 they were quite certain that dh was a form of celiac or did it come way after that? Sorry if I'm freaking anyone out by asking this.  That's not my intent at all, but since cancer is one of my biggest fears I found this rather unsettling.
    • Feeneyja, This will be a little long but I will  try to be brief as possible. See this discussion thread that talks about how Pellagra is often diagnosed as other disease's today because doctor's rarely recognize it today in a clinical setting. Pellagra's is described as the 3 D's if you don't count the 4th D of death if it goes long enough and is not diagnosed in a timely manner. Dementia (Neurological) Digestive (GI problems), Dermatitis issues (Ezcema, Psorsias, Acne etc.) According to mdguidelines website http://www.mdguidelines.com/pellagra indicates that quoting “The diagnosis of pellagra is straightforward when the classic rash is present but may be elusive if there are only gastrointestinal and/or neurological manifestations.” And why I believe in many cases Pellagra goes undiagnosed today.  Because doctor's have forgotten how it presents. A longer researcher article about the neurological presentations of pellagra mention the many ways a Niacin deficiency can present itself. Here is the link https://www.hindawi.com/journals/cggr/2012/302875/ and I will quote some of the neurological/dementia related symptom's of an undiagnosed pellagra patient. "Mental symptoms were wider than dementia, in that depression, fatigue, psychomotor retardation, mania, obsessions, and a whole range of psychoses with auditory and visual hallucinations were well described, along with personality change and sociopathic and drug and alcohol addictive behaviours. Panic disorders were seen as was a general inability to deal with physical or mental stress. Poor brain development such as hydrocephalus or cerebral palsy was also common. Acute delirium or even coma occurred, with some patients having myoclonus and other extrapyramidal signs reminiscent of the spongiform encephalopathies. The dementias of pellagra included features akin to Lewy body, Alzheimer’s, frontotemporal, vascular, and prion diseases. Parkinsonism was also common and a festinant gait was first described in pellagrins. Tremors of various descriptions, including asymmetric rest tremors, were noted and some patients had typical paralysis agitans. Pellagrins had a characteristic expressionless facies, so some signs of parkinsonism were present in most cases. Many features of pellagra closely resemble the nonmotor aspects of PD. The neurological manifestation did not stop there because other degenerative conditions, such as an amyotrophic lateral sclerosis-like picture, were described, with fasciculation of the tongue and upper and lower motor neuron signs. Cerebellar syndromes occurred and vertigo was frequent. Headaches, sensory and pain syndromes, epilepsy, and involuntary movements were noted as well as sleep disturbances. Cord lesions were also seen, as was optic atrophy, so there were multiple sclerosis (MS), like variants." It is me again. You can see the neurological symptom's of Pellagra are severe and wide ranging. Taking Niacinamide 3/day for 6 months can alleviate many of these symptom's if your daughter has subclinical pellagra and the doctor's don't know to look for it. I had deep depression for many, many years and I shudder to think now that only a Vitamin could of helped me 30+ years ago and the doctor's didn't know to look for it. Shoot it isn't just Niacin.  All B-Vitamin's help your stress levels.  IF you have stress B-Vitamins can help your stress levels. I take Folic Acid for Blood pressure problems and it keeps my BP with in a normal range. A article on celac.com discussed this topic in detail a few months ago. https://www.celiac.com/articles/24658/1/A-Differential-Diagnosis-How-Pellagra-Can-be-Confused-with-Celiac-Disease/Page1.html I hope it is helpful.  Good luck on your continued journey. If you have never heard of Pellagra you are not alone. Dr. Heaney discusses why this is so in his online article Pellagra and the 4 D's. http://blogs.creighton.edu/heaney/2013/11/18/pellagra-and-the-four-ds/ If you don't have time to read the whole hindawi article I also suggest this shorter but informative blog about why a Niacin deficiency can cause dementia related conditions. https://pellagradisease.wordpress.com/ Then decide for yourself and your daughter's sake to decide whether to take Niacinamide or not to see if it helps the D's symptom's she is experiencing (Digestive, Dementia etc.) The International Journal of Celiac Disease makes note of this in their research that Pellagra could be contributing to symptom's being diagnosed as Celiac disease today instead of a possible (co-morbid) Pellagra that causes the same symptom's. When they discuss how Pellagra and Celiac disease are related (Co-Morbid) in a Celiac diagnosis are surprised to find that in 58% of Celiac's -- can also be diagnosed with Pellagra. See this link http://pubs.sciepub.com/ijcd/3/1/6/ Quoting 3. Pellagra and celiac disease "The two diseases can be connected in two aspects. 58% of pellagra patients were shown to have malabsorption and many had intestinal pathology on biopsies [36, 37]. Alternatively, Pellagra was described in celiac disease [38]. The skin manifestations in pellagra might have some additional etiologies, since multiple nutrient deficiencies are at the origin of the cutaneous manifestations in celiac disease. The following nutritional deficiencies inducing skin rashes, were describe in celiac disease: Zinc, Iron, Vitamin A, E, B12, niacin, folate, selenium and essential fatty acids [39, 40]." If one is being diagnosed incorrectly the other co-morbid conditions can continue to cause Celiac like symptom's. But if the majority of those who have been diagnosed as Celiac could be helped by taking Niacinamide I see no you reason you shouldn't try it. Or at least research it some more. Again good luck on your continued journey. 2 Timothy 2: 7 “Consider what I say; and the Lord give thee understanding in all things” this included. Posterboy by the grace of God,
    • Read this posted on the FDA.gov site: https://www.fda.gov/food/guidanceregulation/guidancedocumentsregulatoryinformation/allergens/ucm362880.htm
    • Color me confused.  I went to Costco yesterday and there were 2 products there that had GLUTEN FREE plastered on the box but then in the ingredients was a: May contain wheat. How is this possible?  How can they still put gluten-free on the box?  We should be able to trust gluten-free labeling no?? And second question:  How many of you would still buy that item?  I REALLY wanted to buy the Island Way Sorbet for my daughter as it is her FAVE.  But I didn't want to take the risk.  Maybe when she is healthier?  I mean it is SORBET?! LOL So frustrating!
    • JMG I have never laughed so hard! This was the best epic comment I've read! Thankyou so much!  Your all teaching me so much! Love the 'my glass to go' idea!! I will be adopting this... can't believe the mucky glasses we must be drinking from! Shocking!  Im still baffled how so many people don't understand cross contamination i.e. The crumbs on the work surface to cut the lime for your tasty beverage!  Your all amazing Thankyou x
  • Upcoming Events