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Tell Me About Your Repeat Blood Test
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15 posts in this topic

Next month, I will take my daughter back for her 6 month check-up. They will see if her levels have fallen since going gluten free. I can't think of any exposure but then again she doesn't show symptoms so I wouldn't know anyway. She has hashimotos thyroid and I know that can raise Ttg, too. On your repeat blood test, did it show normal or does it take years. (I think I have asked this and someone said it took them 3 years) but they tell me I should know if it is working in 6 months. What experiences have you had? Does yours show fine?

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My 6-month blood work showed a marked decline in antibodies -- close to the 'normal/negative' level but still high or above it. The doctor who reviewed the results said that I was obviously responding to the diet but it can take a year or more to get down to the proper levels. He said they don't worry about 'refractory sprue' until it has been at least 2 years post-diagnosis. I'm curious to see what my 1-year blood work will show in a couple months...

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My 9 year old just had repeat labs after 6 months on the diet and he was in the normal range on everything

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whew! You give me hope!

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We are almost 2 years gluten-free. DS's ttg's dropped but were not back to normal after 18 months. After few strange TSH levels he was dx with a thyroid issue (though they won't say it's hashi's). Because his ttg's were still strange we did a different test (deamineated gliden or something) and we found out that was totally normal which means that his diet was gluten-free but the ttg's were still an issue. We go for the first lab work post thyroid meds in a few weeks and I am curious to see if his ttg's will be normal now that his thyroid is under control.

Good luck!

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thanks- If they can't find anything with his thyroid, are they checking his liver and for type 1 diabetes too? I know my friend's 4 yr old son does not have celiac but has a liver issue that causes it to be high. My DH has type 1 diabetes and I know that can make it high too. I assumed you have to have symptoms of diabetes but apparently your body makes antibodies for YEARS before you can show symptoms. But if he is showing a thyroid issue, get it worked out immediately. My dd has it and didn't grow for a year. They do the "catch-up" growth though and now she is back to normal. I am scared that my dd Ttg will not be normal. Although the thryoid meds control hormone levels, it does nothing for the antibodies that are continuing to attack her thryoid. We just had the test a few weeks ago and after 4 years, she should be under 35 and she is 2800. I can't imagine that WON'T affect her thryoid. I had heard that going gluten-free would help her thryoid antibodies, too but it didn't. At least not after 5 months. It actually even went up a tad.

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Oh no, it is his thyroid. TSH's were all over the place and he's been on synthroid for about 3 months now and and they are normal. They won't dx it as hashi's because his T3 and T4's were not leaning towards that but whatever....I think think it is hashi's but he doesn't fit the clinical picture for them so they won't say it (ya know, like many here know it's Celiac but Dr's don't listen ;) )

Anyway, I am really interested in his blood work to see if the thyroid being under control brings his ttg's to WNL. I think we go in early July.

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Can one be tested to see if they are clear of gluten. I am a 34 year old female, and I was newly diagnosed 10 months ago. It's been a long road, and I am not happy that I have Celiac Disease, but I am happy someone FINALLY found the answer! I am just concerned about the late diagnosis and how damaged my intestines are. I recently had a scope a couple of months ago to check my pancreatic valve, and was told that the damage to my intestines still looks the same. My doctor feels I am still getting gluten somewhere. I am being so very careful, but I realize living with my Husband and our using the same kitchen to cook can cause problems. I have my own section and supplies, but it doesn't mean I am 100% safe, not to mention potential contamination when we eat out. I was just wondering if it was possible to be tested or have a scope on a yearly basis to see if my intestines are repairing or staying the same.....any thoughts? I have been meaning to ask my doctor this question, and will do so at my next appointment.

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Actually you do not have a late diagnosis. Many people are diagnosed at a much later age. In comparison, I am ancient! laugh.gif

I have an appointment with my GI soon and he has ordered some follow-up celiac tests including the tTG and EMA. Thus far I have not been scoped after I had my initial scope two years ago.

In your case I would be concerned about cross-contamination as I think it would be very difficult living in a mixed household. But I know others can do it successfully.

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Im scheduled to go for blood tests every 3 months since my diagnosis. I had it done at 3 months and I never heard anything at all from the doctor. My 6 month test is coming up. Should I be expecting a call from the doc? I figured I would hear from them either way so I could find out where im at.

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Im scheduled to go for blood tests every 3 months since my diagnosis. I had it done at 3 months and I never heard anything at all from the doctor. My 6 month test is coming up. Should I be expecting a call from the doc? I figured I would hear from them either way so I could find out where im at.

Your best bet is personally asking for copies of any lab reports. Call first and then make arrangements to pick them up. I wouldn't necessarily expect the dr. to call. Some just aren't very good at that.

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Your best bet is personally asking for copies of any lab reports. Call first and then make arrangements to pick them up. I wouldn't necessarily expect the dr. to call. Some just aren't very good at that.

Alright I will do that after I go for my 6 month test. Hopefully im able to get them both. I wont know what the numbers mean but im sure people around here will know all about it.

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My son (now 7) showed that his levels went down slightly after 6 months, but the doctor felt it should have been more significant. We stepped up our gluten-free efforts (no more "processed in a facility . . ." and no more eating out. His 1 year tests showed everything in normal range.

I guess it just takes time.

cara

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Can one be tested to see if they are clear of gluten. I am a 34 year old female, and I was newly diagnosed 10 months ago. It's been a long road, and I am not happy that I have Celiac Disease, but I am happy someone FINALLY found the answer! I am just concerned about the late diagnosis and how damaged my intestines are. I recently had a scope a couple of months ago to check my pancreatic valve, and was told that the damage to my intestines still looks the same. My doctor feels I am still getting gluten somewhere. I am being so very careful, but I realize living with my Husband and our using the same kitchen to cook can cause problems. I have my own section and supplies, but it doesn't mean I am 100% safe, not to mention potential contamination when we eat out. I was just wondering if it was possible to be tested or have a scope on a yearly basis to see if my intestines are repairing or staying the same.....any thoughts? I have been meaning to ask my doctor this question, and will do so at my next appointment.

I turned 50 on my last birthday and was diagnosed 4 mos.later. That was nearly 3 mos. ago. I believe that I've had celiac disease most of my life. Because of food sensitivities, I have always watched for what set my digestive symptoms off and have mostly voluntarily and without much thought cut those things from my diet. I, too, believe that I probably have much damage, especially since my symptoms have improved but not as much as I had hoped. I recently had a battery of blood tests performed by endocrinologist, but he didn't do many of the tests I thought he should. He didn't check my vitamin k levels and treated me as though I were an idiot when I asked him about it. I bleed very profusely and have broken capillaries all over my legs, arms, and torso. Although my hemoglobin and hematocrit were normal, my red blood cells were low. Also, my vitamin b-12 and folate were low as was free thyroxine. Can someone please give some advice?

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My GI dr is retesting me only 3 months in, in about two weeks here, with a follow up appt the week following. I have a suspicion my numbers will not be that much lower but I would like to know if I am on the right track, if my numbers are not changed at all I will likely step up my efforts, and eating out. I also have more questions so am happy to be going back.

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    • Thankyou both! I was wondering if my high levels left much doubt on the diagnosis. I don't see the GI until the 15th Sep and I don't think I can stand to eat gluten in that time. If he tells me to I will do so after then. After 25 years of symptoms I don't think there is much chance of healing my bowel In a couple of weeks. I'm actually terrified of the damage they might find. But I think I will need the endo since there may be other things going on with me. So great they didn't put your son through the biopsy! Once I have a formal diagnosis I have my kids to worry about also. I can't even stand the thought of my daughter having a blood test. I think she would need to be sedated as she is so fearful and pain sensitive. My son is not yet 2 so I don't think they will test him. I'm feeling so off at the moment. I think I have some anxiety and reflux going on complicating things quite a bit.
    • My son's antibodies were 300. Based on his extremely high levels, his pediatric GI suggested genetic testing instead of the biopsy. Genetic testing can't diagnose celiac on its own but combined with such high levels, the gi dr was confident a positive genetic test would confidently diagnose celiac. He warned that biopsies are small snapshots of the intestine and can miss damage. He said this is an approach used very often in Europe but not as much in the US. What sold me on that approach was the ability to put my son directly on a gluten free diet instead of waiting three weeks for the biopsy, during which time he would continue to eat gluten and feel terrible. I'm not sure if this is more common with younger patients though (our son is two), based on the idea that he's had less time to inflict damage that would show in a biopsy? We are very happy that we immediately started the gluten free diet and chose the genetic testing. Our son got the proper diagnosis and his recent number shows a drop to 71 after only 4.5 months gluten free! Not sure if this helps. Good luck and I hope you feel better soon!
    • We have been off gluten for a while now, and symptoms return when I've allowed gluten full meals… so something still isn't sitting right with me.  Checking with her doc about seeing a pediactric GI although I'm not sure how long that will take since we live in small town America. I know she didn't get at least one of the recommended full panel tests but maybe two, can someone help clarify, or is she missing two? DGP for sure and possibly EMA? And if I understand what I'm reading in other posts that the DGP can be more accurate? Thanks Her blood panel results: Ttg ab iga <.5u/ml ttg igg <.8u/ml aga ab iga <.2 u/ml aga an igg <.7u/ml iga 61mg/dL  
    • I was tested for the full panel, I believe. I had normal values for t-transglutaminase (ttg) igg,t-transglutaminase (ttg) iga, deamidated gliadin abs igg, deamidated gliadin abs iga, and immunoglobulin a qn serum.  
    • Going gluten free may be beneficial if you're among the roughly 10 percent of people who suffer from celiac disease, a genetic immune disorder, ... View the full article
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