Hi! I'm very new to this world (two weeks new, to be precise) and was wondering if I might be able to get some advice. A couple weeks ago I found out that I was pregnant (I'm at seven weeks now), and a few days later I got a positive result on a TTG-IGA (I think that's what it was called... the requisition form says "anti-transglutaminase IgA") test that my doctor ordered for me. I am on synthroid after a partial thyroidectomy and my doctor ordered the celiac testing just as a routine thing due to the correlation between the two things. Surprise! My results came back at 110, which my doctor tells me is quite high. I didn't *think* that I had any symptoms, though in hindsight I realize that maybe bloating and gassiness after having a slice of bread isn't normal the way that I thought it was, and I wonder if I can ascribe the migraines I've long suffered and maybe even my thyroid troubles to this.
Because I'm pregnant, I've chosen to go gluten-free immediately and not do the biopsy until I've delivered my baby because I don't want to do anything that involves sedatives, etc. that's not totally, totally necessary while I'm pregant. I know that I'm going to have to do a gluten challenge at the end of all this in order to get accurate results.
I think it's probably just the hormones, but I'm feeling really, really anxious about all this and the baby and everything. Is there anything that I should be doing to make sure I'm helping my body get all the nutrients it needs to support the baby? Is the TTG test fairly reliable? Given that a positive result is anything over 10.0 U/mL, my doctor says I can pretty safely assume I've got celiac. I'm okay with this and actually a little excited about possibly resolving a whole whack of health problems with only ONE diagnosis, but it bothers me for some reason not to KNOW that I need to be gluten-free, even though obviously I'm not going to take any chances during pregnancy. Am I crazy? Is this result as high as my doctor is telling me?
First congrats on the baby!!!! Im waiting to get tested myself but my one year old had a positive and it was only at 16...she went through the biopsy it was neg...her GI said go gluten free and see if symptoms improve...So my point is we basically did the biopsy and still got the diagnose to go gluten free regardless of the results weathe rit was pos or neg...so going gluten free is the way to go...our GI did say Emmas result was low and true celiacs do tend to have rates over 100 but considering her age it was rare she even tested pos..I wish I had more insight but im new to this too!!!
I think that you are doing all you can by going gluten free now, and it`s very wise to do so. It is certainly highly probable that you have celiac so I would assume that at this point, even if you do the endo later for confirmation. Speak to your doctor about nutritional deficiencies that are possible because of this and they can test your levels to see where you are. And to be quite honest, I believe that eating gluten free is probably better for everyone, regardless of celiac, so even if it turns out that you don't have it, it can't hurt.
Thanks! I think it's just the overwhelm of finding out that I'm pregnant AND that I (probably? maybe?) have celiac all in one week. To be honest, I'm afraid to check about nutritional deficiencies. I'm already pregnant, and there's not much I can do to correct what's in the past... I've got a really good (gluten-free, thankfully) prenatal vitamin that I've been taking for months and months now, so I'm really hoping that has helped with covering any malabsorption issues I might have been having.
mmcc54, my doctor told me that results for kids under 2 aren't always really reliable (especially when talking about biopsy), so maybe that's why her biopsy was negative? I'm taking my two-year-old daughter off gluten along with me because I've had concerns about it for her anyway, and it's easier to just feed her what I'm eating!
Congratulations on baby #2! And welcome to the board.
100 is a high test result. I think you can be fairly confident that it is caused by celiac disease. A positive tTG IgA is generally much closer to the normal when it is caused by thyroiditis, liver disease, or crohns and colitis. The specificity of the tTG IgA test to celiac disease is 91-99%, meaning that 1-9% of the time a positive result is caused by something else. Because your score was so high, I would venture to guess that your odds of it being something else are pretty slim.
I mention all of this because some find it very difficult to go back to eating gluten, and feeling sick, after feeling better for a few months. Gluten reactions may become worse. If you are unable to do a gluten challenge in the future for that reason, or to avoid messing with breastfeeding if you newborn is a celiac, you can be fairly sure of being a celiac in spite of not having endoscopic proof..
The nutritional deficiencies common amongst celiacs are calcium, potassium, iron, ferritin, D, B12, and zinc. If you are concerned about deficiencies, you might want to have your doctor check into those.
I hope you feel better soon and manage to avoid symptoms of gluten withdrawal that sometimes hit in the first few weeks.
p.s. Going gluten-free GREATLY reduced my migraines. I hope you have luck in that area too.
I think it's probably just the hormones, but I'm feeling really, really anxious about all this and the baby and everything. Is there anything that I should be doing to make sure I'm helping my body get all the nutrients it needs to support the baby?
Eat a wide variety of naturally gluten free foods from uncontaminated cooking equipment, and you guys will be fine. Whole fruits and vegetables are gluten free, as are whole (unprocessed) meats, eggs, milk/cheese, nuts, beans, most oils, and so many more. Eating unprocessed foods are healthier for you and baby anyway!
What sort of things in particular are you concerned about? What sort of things do you usually eat that you can't now? We can offer specific suggestions that might help. (I mostly lived off of eggs and avocado the first trimester of my pregnancy. )
Tiffanyaka "Have I Mentioned Chocolate Lately?" Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy G.F. - September 2003; C.F. - July 2004 Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me Bellevue, WA
Thanks for the good, reassuring, advice and the welcome. This is a great community!
I`m lucky that going gluten-free isn't be a huge lifestyle change for us. We already eat a whole-foods diet, heavy on good animal fats/proteins and lots and lots of produce. As far as gluten-containing food goes, in our own home (family's a whole other can of worms, I'm learning!) we actually had only been eating my homemade sourdough for the last little while, so I'll miss that, but there's nothing else to clear out from my pantry. From the research I've done, it doesn't seem like cutting the bread is suddenly going to cause a huge nutritional deficiency. Hooray for real food!!
nvsmom, thanks for the info about test results. I am already nervous about the idea of doing a gluten challenge, especially while caring for a newborn. And I'm going to check in with my doctor about nutrient deficiencies. I've always ALWAYS had low iron levels and had to supplement during my last pregnancy, so that's something in particular I'm interested to look into. I didn't know about the other nutrients you mentioned, so I appreciate it. And I hope I'll have the same good results with migraines as you!
I hit a withdrawal some the migraines got worse for a short time before it got better. Give it a few weeks to see changes starting to happen. I now only have migraines a couple days a month whereas before it was 10-15 days a month... I was soo happy my migraines were gluten linked; I had resigned myself to migraines for the rest of my life - I'm sure you understand.
Good luck with the nutrient testing. I hope there are no problems.