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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 Celiac.com's FREE weekly eNewsletter   What are the major symptoms of celiac disease? Celiac Disease Symptoms What testing is available for celiac disease?  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 What if my doctor won't listen to me? An Open Letter to Skeptical Health Care Practitioners Gluten-Free recipes: Gluten-Free Recipes


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About Amber52377

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  1. We opted to have our son tested when he was 15mos old knowing the results most likely wouldn't be accurate b/c of 1) his age & 2) his immunodeficiencies. We were right, his blood work has tested negative 2x & biopsy 1x. However, he's had a + reaction to both the skin prick test & to a gluten-free diet so according to his immunologist, he at the very least has a sensitivity/intolerance if not outright celiac disease. So, gluten-free it is. It's much easier to get people to take you seriously when you have a Dr's "blessing" on the whole thing. I know it makes DH's family stop & pay better attention since it's coming from the Dr & not me.
  2. My youngest son was diagnosed w/a gluten/wheat allergy this past Friday (May 13th) after doing a 2 mo elimination diet. We've been instructed to continue w/the gluten free diet, restrict dairy intake & keep fruits/fruit juice to no more than 1 serving per day. Is there anything else we should be looking at? Doing? Some background: April 2009 @ 1yr appt- told pedi about horrific chronic diarrhea, not sleeping through the night, irritability, waking up SCREAMING & throwing himself around in pain, just miserable in general. Was referred to pedi GI May 2009- saw pedi GI who ran all kinds of blood work, including the celiac panel at my request b/c of an extensive family history of AI- myself included. Blood work for celiac was negative, dx w/moderate reflux & was put on 30mg of prevacid. Also discovered his IgG, IgA, neutrophils, lymphocytes & eosinophils were all abnormally low. Pedi referred us to an immunologist/allergist. Still having horrific diarrhea issues. July 2009- saw immunologist who dx Transient Hypogammaglobulinemia of Infancy & Selective IgA Deficiency- explained chronic diarrhea was a symptom of both immunodeficiencies. Sept 2009- Upper EGD w/10 site biopsy was done. Negative for celiac, positive for GERD. 2010- back & forth between both Drs trying to figure things out. Immune system numbers improved but diarrhea & night waking/irritability still the same. Both GI & immuno suggested it was a matter of Evan "outgrowing" his problems. Mar 2011- Fed up Momma DEMANDED food allergy testing. Out of the 16 foods tested in a skin prick test- , egg yolk, whites & wheat were the most positive w/ 5x5 wheals & 15x15 flares followed by soybean- 5x5 wheal & 10x10 flare. Immunologist put Evan on a dairy, egg & gluten/wheat free elimination diet for a month with instructions to reintroduce foods one at a time over the course of the next month. Here's where I start to have questions on things. Evan showed minor improvement after being on the elimination diet- stools 1x daily, slightly more formed & he started sleeping through the night. Over the next 3 wks, we added all three foods back seemingly w/o incident though we started noticing diapers weren't as formed & he was waking during the night again- just not every night. Then starting May 4th, the diarrhea was back full force- NASTY smelling, very runny, greenish w/black sandy flecks that were difficult to get off w/o a bath. Waking every.single.night. At our follow up on the 13th, the immunologist dx him with a wheat/gluten allergy based on his symptoms & the fact we saw an improvement during his elimination diet. Is the immunologist right? Is it the wheat/gluten? I asked about testing other things & he said he didn't think that was it b/c if it were something else, we never would've seen an improvement, no matter how small it was. He also told me that blood work didn't need to be done since a diet reaction was the "gold standard" for diagnosis despite all kinds of negative tests. Is he correct? Should I seek a 2nd opinion? I must mention I'm not a big fan of the guy- he has a slick, used car salesman personna that drives me nuts.
  3. See a pedi immunologist. Low IgG means something's going on w/the immune system & is most often related to Primary Immune Deficiency Disorders. My son has the exact same thing- low IgA & low IgG but normal subsets (if those haven't been tested, get them done b/c they give a better picture of what's going on). He also has low neutrophils which is another component of the immune system. So far, Evan's undergone celiac testing 2 different times & last Sept had an EGD w/biopsy done- all is negative. The immunologist diagnosed him with: Selective IgA Deficiency & Transient Hypogammaglobulinemia of Infancy because he makes antibodies to vaccines (they did a prevnar vaccine challenge). His main symptom that started this ball rolling was chronic diarrhea (now ongoing for over a year), irritibility, waking during the night SCREAMING. Turns out, in addition to his immune system issues, he also has moderate reflux & is on 30mg of prevacid. Right now, Evan's immune system issues are being treated w/ 125mg omnicef daily- unless he gets an ear infection (he's had 8 in the past year), then he's put on Septra 2x daily for 10 days. It's difficult but if you can successfully coordinate care between the pedi GI & immunologist, you'll hopefully start to find answers. Also, I would recommend doing a LOT of research! If you want more immune system information- esp on Primary Immune Difficiency Disorders (or PIDD), I suggest visiting www.primaryimmune.org. There is a TON of relevent information. Feel free to as me any questions! Hope that helps!
  4. My son (17mos) is having an endoscopy w/biopsy on Friday morning. Our pedi GI recommended this as a next step despite his celiac panel coming back negative. Based on some bloodwork, he has low serum IgA & IgG (subsets are normal) levels which I've come to understand will skew the celiac panel. Is it possible she'll be able to see any damage? What can I expect? How will recovery be? Our Immunologist is in full agreement to do the endoscopy b/c of his chronic diarrhea issues (going on 8 mos of soft/loose but NOT greasy stools) & his low Ig levels. We've been able to rule out dairy & soy allergies as the culprit. At this point, we're not sure if he does or doesn't have celiac- it's just a hunch we're following since I have psoriasis & psoriatic arthritis & some blood work of mine has suggested I could possibly have "asymptomatic" celiac. My son is growing & thriving- 80% for weight & 92% for height so we don't have malabsorption issues; just a very irritable little boy w/reflux that's breaking through 30mg prevacid daily & 3-4 soft/diarrhea diapers a day. Thanks for any insight/questions I should be asking.
  5. I'm jumping in a bit late here... in my quest to find out what's wrong w/my 16mo son, I've come across this. CVID- common variable immune deficiency. I speculate my son has this. He has low IgA & IgG serum levels (3 wks after receiving vax & being sick w/an ear infection), chronic diarrhea, chronic runny nose (sinusitis) & has been treated for several ear infections. I originally took him to a Pedi GI b/c of the 6+ mos of diarrhea in addition to my history of autoimmune issues (have psoriasis, psoriatic arthritis & most likely "asymptomatic" celiac). I speculated celiac disease. All of his celiac testing came back fine other than his immunoglobulins. Thankfully our GI knows the tests have a high false negative rate & is holding off on dismissing celiac until after we meet w/the Immunologist tomorrow. She also knows that if he does have an immunodeficiency, it can skew the celiac panel results. We are tentatively talking about doing endoscopy w/biopsy next month depending on the Immunologist. I urge you to look at CVID. It's entirely possible that you have celiac & another autoimmune disorder b/c having one, predisposes you to developing another. Good luck!
  6. My youngest son's been undergoing testing for celiac. So far he's had: anti endomysial antibodies crp quantitative ESR Tissue Transglutaminase (tTG) Antibodies (IgG & IgA) CBC Base Metabolic Panel Liver/Hepatic Function Panel Thyroid Panel Stool C Diff toxin A & B- parasite Stool O & P X 3/Giardia Antigen- IBS Cryptosporidium- parasite All came back fine except for his globulin levels which were low. The pedi GI sent us for: IgA, IgG & subsets, IgE & IgM Base Metabolic Panel- repeat This morning I rec'd a phone call from the pedi GI telling me that my son's electrolyte levels are low & that she wants to send us for yet more blood work. He went this afternoon for: Base metabolic panel (3rd time) Serum Amino Acids Urine Organic Acids I had a few questions so I talked to the NP at the GI's office. She told me the following: IgA: 21 (24-121 normal) IgG: 458 (533-1070 normal) IgG Subsets: Normal Electrolytes: CO2: 15 (20-28 normal) She mentioned the latest lab requests are metabolic panels b/c of the consistently low CO2 levels (guess it was low the 1st time around but no one said anything?). Can any of this be attributed to Celiac? I questioned her on a possible IgA deficiency but she told me that I'd have to discuss that w/an Immunologist. Can you have low IgA & low IgG levels & still have celiac? We have a follow up Aug 13 & I'm really contemplating having endoscopy done so we can see what his insides really look like. He's had over 6 mos of chronic diarrhea but thankfully he eats like a horse & is at the top of the charts. Thanks!
  7. Blood Work

    I have a new lab request w/the following tests being ordered: IgG, IgA, IgM, IgE serum level IgG Subclasses I, II, III, IV Can anyone shed light on what the pedi GI might be searching for or ruling out? We don't have our follow up appt until Aug 13. From what I've been researching, it looks like she's attempting to see where his globulin deficiency is? I have no idea what his globulin levels were prior, just that they were low. Could any of this be related to celiac or is it possible we're pursuing another illness? Thanks for any insight! Ravenwoodglass- thank you for the reassurance that we're doing the right thing. It's so terribly difficult seeing your child hurt. We need answers b/c he's miserable most of the time, very whiny & irritable. He wakes at least 3x week SCREAMING in the middle of the night, has constant purple smudges under his eyes & very rarely has a "formed" stool in his diaper- typically very soft or loose if not outright watery diarrhea. <sigh> So difficult.
  8. Hi there, newbie here! My son (15mos) recently saw a pedi GI b/c of chronic diarhhea & GERD issues. Based on my history of autoimmune disorders (I have psoriasis & psoriatic arthritis as well as suspected asymptomatic celiac), the GI opted to do a full panel to try & get to the bottom of his ongoing issues. He had the following tests done: Anti endomysial Antibodies CBC CRP Quantative ESR Tissue Transglutaminase (tTG) Antibodies (IgG, IgA) BMP Liver/Hepatic Function Panel Thyroid Panel She has also ordered the following stool tests: Stool C Diff Toxin A&B Stoo O & PX 3/ Giardia Antigen Cryptosporidium. We just got the stool samples in to the lab. The GI's office called today & told me that his blood work results were in & that everything looked alright except for his Globulin levels. She said they were low. I've done a bit of Googling so I realize that the results could be indictive of several things. However, I'm curious to know if the low levels could rule out his having celiac. Also, if someone could point out which test might've come back w/the low results, I'd greatly appreciate it. We've not attempted going gluten free so we don't skew any tests w/the GI. Our GI did want us to go back for more testing, a repeat of the low test & a couple of others. Any idea what that might be? I don't have the lab orders yet... I pick them up Monday. Thank you! I truly hope we find answers b/c right now, my little one is miserable & irritable beyond all get out! Part of me hopes nothing's wrong & the other part hopes there is b/c then we'd at least have answers & some sort of direction. ~Amber