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      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.

+ Blood Test, - Biopsy And More.
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6 posts in this topic

My daughter was positive on a blood test and negative on a biopsy. She is IgA deficient. She is also pre-diabetic.

Question #1 what does that mean???

My son has been having horrible stomach pains for 2 years. The Dr. was only willing to check him if my daughters biopsy came back positive. His blood test came back negative but he is severely IgA deficient and that changes blood tests.

Question #2 Should I push the issue and talk to the Dr. AGAIN about checking my son or just remove glutin from his diet on my own.

My husband and I are very frustrated with all this. Our son has horrible joint pain, horrible stomach pain, asthma, IgA deficiency, allergies (wheat, oats and eggs). We don't know what to do or where to turn to get our boy some help. If our daughter would have been positive in the biopsy then our son would be checked next. Now we are left to "monitor his pain" for a few more months. There is only 1 pediatric gastro in the area otherwise we would get a 2nd opinion.

PLEASE HELP!!!

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Hi ship.

The Dr. who did the biopsy may have missed the damaged areas, damage can be patchy, or maybe didn't do enough biopsies. Since her blood was positive you should try gluten-free and see if it helps her.

Can you list the blood tests and ranges for your children? There are many people here that are very good at understanding the results. Also to make sure they have had all the correct testing for celiac. Other testing you could have done is vitamin and mineral levels to be sure they are not deficient in any of those. Vitamin deficiencies are also symptoms.

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My daughter was positive on a blood test and negative on a biopsy. She is IgA deficient. She is also pre-diabetic.

Question #1 what does that mean???

My son has been having horrible stomach pains for 2 years. The Dr. was only willing to check him if my daughters biopsy came back positive. His blood test came back negative but he is severely IgA deficient and that changes blood tests.

Question #2 Should I push the issue and talk to the Dr. AGAIN about checking my son or just remove glutin from his diet on my own.

My husband and I are very frustrated with all this. Our son has horrible joint pain, horrible stomach pain, asthma, IgA deficiency, allergies (wheat, oats and eggs). We don't know what to do or where to turn to get our boy some help. If our daughter would have been positive in the biopsy then our son would be checked next. Now we are left to "monitor his pain" for a few more months. There is only 1 pediatric gastro in the area otherwise we would get a 2nd opinion.

PLEASE HELP!!!

I just have a question. Are you seeing a Gastro Dr. or is it your Pediatrician that won't do the testing? As mom's we know when our children are hurting and it is hard when we don't get the help we need.

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Blood test results for things that were a little off are:

Calcium 9.8 Normal being 8.0-9.5

RDW-SD 34.7 Normal Being 36.4-54.5 I don't know what that is

Lymphocytes 18.5 Normal Being 30.0-65.0 Don't know what that is

Gliadin IGG AB 15.0 Nromal under 10

IGA 63 Normal being 64-246

Hemoglobin 6.0 Normal being 4.0-5.7

Estimated Average Glucose 126

ALT (SGPT) 28 Normal 30-65 Don't know what that is

We are currently seeing a Pediatric Gastro for 2 of my kids. We started off with my son but his blood work came back normal. His IgA is 12 with 64 being the low normal. The Gastro would only be willing to do the Endo if my daughters biopsy came back normal. My daughter has only been in pain for less than 3 months. My son has been in pain for 2 years but has never been checked out. We are very frustrated.

Thank you both for looking at my post.

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Blood test results for things that were a little off are:

Calcium 9.8 Normal being 8.0-9.5

RDW-SD 34.7 Normal Being 36.4-54.5 I don't know what that is

Lymphocytes 18.5 Normal Being 30.0-65.0 Don't know what that is

Gliadin IGG AB 15.0 Nromal under 10

IGA 63 Normal being 64-246

Hemoglobin 6.0 Normal being 4.0-5.7

Estimated Average Glucose 126

ALT (SGPT) 28 Normal 30-65 Don't know what that is

We are currently seeing a Pediatric Gastro for 2 of my kids. We started off with my son but his blood work came back normal. His IgA is 12 with 64 being the low normal. The Gastro would only be willing to do the Endo if my daughters biopsy came back normal. My daughter has only been in pain for less than 3 months. My son has been in pain for 2 years but has never been checked out. We are very frustrated.

Thank you both for looking at my post.

Have you considered taking him to a different Dr. ?

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Do you have a copy of your son's test results? A serum IGA of 12 is extremely low. How many of the IGG tests did they run? I notice you listed only Gliadin IGG for your daughter. What tests did they run on your son? You should be looking on there for tTG, EMA and DGP. These are the other tests that constitute the celiac panel, and since your son is not an IGA producer they should have run the IGG versions of all these.

I believe the ALT is a liver function test.

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    • Good advice Ennis!  I would add baking and freezing some gluten-free cupcakes to have on hand, so that she is never left out.  Be sure to read our Newbie 101 tips under the coping section of the forum.  Cross contamination is a big issue,  If the house is not gluten free, make sure everyone is in board with kitchen procedures.   Hopefully, your GI talked about the fact that this AI issue is genetic.   Get tested (and your TD1 child).  TD1 is strongly linked to celiac disease.  About 10% of TD1's develop celiac disease and vice versa.  Get tested even if you do not display any symptoms.    http://www.cureceliacdisease.org/screening/ https://celiac.org/celiac-disease/understanding-celiac-disease-2/diagnosing-celiac-disease/
    • What does weak mean?  Like you squat down and and you can not get back up?  Or are you fatigued?  When you said blood panel, was your thyroid tested?  Antibodies for thyroid should be checked if you have celiac.  So many of us have thyroid issues.  
    • We are not doctors, but based on the results you provided, you tested negative on the celiac screening test.  You could ask for the entire celiac blood panel to help rule out celiac disease.  The other IgA that was high?  It normally is given as a control test for the TTG IgA test (meaning if the celiac test results are valid).  In your case, the TTG IgA test works.  Outside of celiac disease, you might have some infection.  Discuss this with your doctor as he has access to your entire medical file.  I would not worry about it though over the weekend!  
    • See: http://www.cureceliacdisease.org/faq/can-a-skin-biopsy-for-dermatitis-herpetiformis-dh-confirm-celiac-disease-or-is-an-endoscopy-still-needed/ Take a copy of that with you or mail it to the doc. How many endoscopic biopsies did they take? Those with dh tend to have patchier damage than "normal" celiacs.
    • Ironictruth, I think that is a very insightful thought. since different antibodies present for different body systems all the ways gluten affects the body is still not well understood. Here is a case of presumably someone who had the gut damage of a celiac but also had neurological damage. http://www.nature.com/nrneurol/journal/v3/n10/full/ncpneuro0631.html entitled "A case of celiac disease mimicking amyotrophic lateral sclerosis" so it has happened in the literal but since this is not well understood people don't make the connection today. I would also point you to this hindawi article on the "Lesson's learned from Pellagra" but I am afraid we haven' learn't yet. https://www.hindawi.com/journals/cggr/2012/302875/ notice specially the 2.1 section clinical feature of pellagra and all the neurological symptom's once associated with a Pellagra patient. quoting "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." which tells me doctor's don't recognize pellagra today when they see it because they haven't seen it in 75+ years. ***this is not medical advice but read the hindawi journal on lesson's learned and I think you will see yourself in their many descriptions of all the way Pellagra presents itself to doctor's and patients still suffering today and you can see why it (like celiac) is hard to pin down today because it presents in so many ways it can be soo overwhelming and since vitamins are not a focus anymore today (especially b-vitamins) that today I believe we are doomed to repeat history's lessons unless the current generation learns again all the ways pellagra presents itself today. good luck on your continued journey. posterboy by the grace of God,  
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