• 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.

Questioning Diagnosis
0

11 posts in this topic

I just had the blood test done for Celiac's and the doctor said "one of the five tests came back very positive". She wants me to go on the diet to see if my symptoms go away. My question is...if only one part came back positive, doesn't that mean four parts came back negative. Should I ask for further testing BEFORE I change my diet? I was diagnosed with an very slight allergy to wheat as a child...but not even enough to treat. Could that have affected the test? I am new at this, so how would you suggest I proceed? Any guidance would be appreciated.

Sandy

0

Share this post


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


Which test came back positive?

0

Share this post


Link to post
Share on other sites

I got the results from the nurse over the phone. I had to ask which one came back positive. She sounded hesitant, started to say "anti-gl....", then said "ABS". I didn't know there was an ABS!!

Sandy

0

Share this post


Link to post
Share on other sites

The Anti-Gliadin Antibodies are IGA and IGG. That is what they were referring to. Did they say if both or one was positive? With both of those positive there is 95-98% chance you have celiac are stats I have heard of people with both positive. Which other tests did they test for?

If they both tested positive I would go on a gluten-free diet.

0

Share this post


Link to post
Share on other sites

She didn't tell me if it was one or both. I made an appointment to go in and talk to the doctor instead of the nurse this Thur. I will ask then. Thanks! That is exactly the kind of thing I need to know in order to even know what to ask the doctor. Do you know what the percentage is if only one test was positive? The nurse did say "one of the five tests came back positive".

Sandy

0

Share this post


Link to post
Share on other sites
Ads by Google:


It depends what all they tested for. There are certain tests that are more specific for celiac then others. The IgA is more specific then the IgG.

These are stats that I got from a site about it:

For, celiac disease, anti-gliadin IgG are more sensitive (about 100%) than IgA (about 50%), but IgA antibodies are more specific (about 95%) than IgG (about 60%).

If you decide to do further testing make sure you get it done by a reliable lab who is experienced and skilled in testing for celiac. I got my 2nd blood test(the one that diagnosed me) from Prometheus which is an experienced lab with celiac. They test for some things that regular tests don't test for and they are experienced with celiac reading.

Also this is at the bottom of a blood test I have and it says that Celiac patients have an increased IgA deficiency. Therefore, negative IgA antibody assay results do not necessarily rule out celiac disease.

If you need more info just let me know :D

0

Share this post


Link to post
Share on other sites

What kind of symptoms do you have? Is it worth it to you to try the diet and see?

Did they mention doing a biopsy?

richard

0

Share this post


Link to post
Share on other sites

Blood tests can come back negitive even if you have Celiac Disease.

If you feel that you need more proof before trying the diet there are other tests you can take. My brother hdid blood and biopsy even though there is afamily line of Celiacs. It's up tpo you. You could just try the diet and see how you feel.

If you think you might just have a wheat allergy then look further into that.

Good luck!

0

Share this post


Link to post
Share on other sites

I have irritable bowel symptoms and am VERY skinny. I have some neurological problems (tics, tremors) but those don't seem to relate to celiac disease, do they? I am on Topamax for the tremors which kind of explains my weight (Topamax is also used as a weight loss drug)... so I feel like it may just be IBS.

No one has mentioned a biopsy yet. But I have only talked to nurses. I get to see an actual doctor on Thursday. With the way insurance is I don't know if I can talk them into any further tests. That would cost them MONEY!

Thank you for all your input. I am learning so much. I feel like I know more of what to ask about on Thursday. I hope my doctor is informed about celiac disease.

Sandy

0

Share this post


Link to post
Share on other sites

Neurological problems can be associated with celiac. Celiac has many symptoms and some people don't have symptoms, and people who do have symptoms vary from person to person.Celiac is commonly misdiagnosed. IBS can be one of the misdiagnosis issues. A blood test can turn out negative and you could still have it. A biopsy was mentioned by a few people and you might want to consider talking to your doctor about that as well. You could always try the diet and see if you improve or not, you could look into other possibilites, or get a biopsy done. Talk to the doctor about your options and about your blood tests you had done.

0

Share this post


Link to post
Share on other sites

Sorry...I meant to say that none of the nurses mentioned anything about a biopsy. I will talk to the doctor about the biopsy, the blood test results, and a possible link to the neurological problems. Thanks again for all your explanation.

Sandy

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
      106,466
    • Total Posts
      930,721
  • Member Statistics

    • Total Members
      63,896
    • Most Online
      3,093

    Newest Member
    LMS
    Joined
  • Popular Now

  • Topics

  • Posts

    • KathleenH, I swear by MatteosPizza and they make National Delivery. I have been known to buy them by the dozen. https://www.matteospizza.com/ BellaMonica's is not a bad corn based crust.  By not bad I mean "suprisingly good" that can be bought at most grocery stores. Here is there ZIP locator page to see if they are carried in your local area. http://glutenfreepizza.typepad.com/gluten-free-pizza/where-to-find-bella-monica.html I hope this is helpful. posterboy,  
    • Hey all--have Hashimoto's and am being worked up for epigastric discomfort and IBS like symptoms---   My blood work had an IgA within the lower end of normal range, negative TTG, but weakly positive DGP.   My endoscopy showed a "nodular" duodenum with the biopsy stating there was "reactive lymphoid hyperplasia"...   I have a follow-up with the GI in 3 weeks.   Wondering about any help?
    • DH wasn't linked to celiacs until 1967 from my research...
    • 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,
  • Upcoming Events