Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Tell Me About Your Repeat Blood Test

1974girl

Recommended Posts

1974girl Enthusiast
1974girl
Posted

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?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


BabsV Enthusiast
BabsV
Posted

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...

upwitht21 Rookie
upwitht21
Posted

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

1974girl Enthusiast
1974girl
Posted
  • Author

whew! You give me hope!

StephanieL Enthusiast
StephanieL
Posted

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!

1974girl Enthusiast
1974girl
Posted
  • Author

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.

StephanieL Enthusiast
StephanieL
Posted

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Krussell21 Newbie
Krussell21
Posted

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.

sa1937 Community Regular
sa1937
Posted

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.

Silencio Enthusiast
Silencio
Posted

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.

sa1937 Community Regular
sa1937
Posted

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.

Silencio Enthusiast
Silencio
Posted

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.

Cara in Boston Enthusiast
Cara in Boston
Posted

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

  • 2 weeks later...
ncallier Newbie
ncallier
Posted

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?

Mom-of-Two Contributor
Mom-of-Two
Posted

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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. xxnonamexx
      - xxnonamexx replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    2. cristiana
      - cristiana replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms. I was diagnosed in 2013 and was told immediately that my parents, sibling and children should...
    3. chrisinpa
      - chrisinpa commented on Scott Adams's article in Skin Problems and Celiac Disease
      2

      Celiac Disease and Skin Disorders: Exploring a Genetic Connection

      Maybe they can attribute certain skin conditions to either being susceptible to getting Celiac......or the other way around....but I have to ask if certain people are prone to Celiac because of genetics and some people aren't. It's kind of the same thing as what came first.....the chicken or the egg.?
    4. knitty kitty
      - knitty kitty replied to xxnonamexx's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      My journey is it gluten or fiber?

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities. If you are trying to add more fiber to your diet to ease constipation, considering...
    5. trents
      - trents replied to sha1091a's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      2

      Issues before diagnosis

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,697
    • Most Online (within 30 mins)
      7,748
    Nicole Poirier
    Newest Member
    Nicole Poirier
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • xxnonamexx
      My journey is it gluten or fiber?

      By xxnonamexx · Posted

      I read that as well but I saw the Certified Gluten free symbol that is the reason I ourchased it.
    • cristiana
      Issues before diagnosis

      By cristiana · Posted

      I agree, it so often overlooked! I live in the UK and I have often wondered why doctors are so reluctant to at least exclude it - my thoughts are perhaps the particular tests are expensive for the NHS, so therefore saved for people with 'obvious' symptoms.  I was diagnosed in 2013 and was told immediately that my parents, sibling and children should be checked.  My parents' GP to this day has not put forward my father for testing, and my mother was never tested in her lifetime, despite the fact that they both have some interesting symptoms/family history that reflect they might have coeliac disease (Dad - extreme bloating, and his Mum clearly had autoimmune issues, albeit undiagnosed as such; Mum - osteoporosis, anxiety).  I am now my father' legal guardian and suspecting my parents may have forgotten to ask their GP for a test (which is entirely possible!) I put it to his last GP that he ought to be tested.  He looked at Dad's blood results and purely because he was not anemic said he wasn't a coeliac.  Hopefully as the awareness of Coeliac Disease spreads among the general public, people will be able to advocate for themselves.  It is hard because in the UK the NHS is very stretched, but the fallout from not being diagnosed in a timely fashion will only cost the NHS more money. Interestingly, a complete aside, I met someone recently whose son was diagnosed (I think she said he was 8).  At a recent birthday party with 8 guests, 4 boys out of the 8 had received diagnosis of Coeliac Disease, which is an astounding statistic  As far as I know, though, they had all had obvious gastric symptoms leading to their NHS diagnosis.  In my own case I had  acute onset anxiety, hypnopompic hallucinations (vivid hallucinations upon waking),  odd liver function, anxiety, headaches, ulcers and low iron but it wasn't until the gastric symptoms hit me that a GP thought to do coeliac testing, and my numbers were through the roof.  As @trents says, by the grace of God I was diagnosed, and the diet has pretty much dealt with most of those symptoms.  I have much to be grateful for. Cristiana
    • knitty kitty
      My journey is it gluten or fiber?

      By knitty kitty · Posted

      @xxnonamexx, There's labeling on those Trubar gluten free high fiber protein bars that say: "Manufactured in a facility that also processes peanuts, milk, soy, fish, WHEAT, sesame, and other tree nuts." You may want to avoid products made in shared facilities.   If you are trying to add more fiber to your diet to ease constipation, considering eating more leafy green vegetables and cruciferous vegetables.  Not only are these high in fiber, they also are good sources of magnesium.  Many newly diagnosed are low in magnesium and B vitamins and suffer with constipation.  Thiamine Vitamin B1 and magnesium work together.  Thiamine in the form Benfotiamine has been shown to improve intestinal health.  Thiamine and magnesium are important to gastrointestinal health and function.  
    • trents
      Issues before diagnosis

      By trents · Posted

      Welcome to celiac.com @sha1091a! Your experience is a very common one. Celiac disease is one the most underdiagnosed and misdiagnosed medical conditions out there. The reasons are numerous. One key one is that its symptoms mimic so many other diseases. Another is ignorance on the part of the medical community with regard to the range of symptoms that celiac disease can produce. Clinicians often are only looking for classic GI symptoms and are unaware of the many other subsystems in the body that can be damaged before classic GI symptoms manifest, if ever they do. Many celiacs are of the "silent" variety and have few if any GI symptoms while all along, damage is being done to their bodies. In my case, the original symptoms were elevated liver enzymes which I endured for 13 years before I was diagnosed with celiac disease. By the grace of God my liver was not destroyed. It is common for the onset of the disease to happen 10 years before you ever get a diagnosis. Thankfully, that is slowly changing as there has developed more awareness on the part of both the medical community and the public in the past 20 years or so. Blessings!
    • knitty kitty
      Dizziness after eating green beans?

      By knitty kitty · Posted

      @EndlessSummer, You said you had an allergy to trees.  People with Birch Allergy can react to green beans (in the legume family) and other vegetables, as well as some fruits.  Look into Oral Allergy Syndrome which can occur at a higher rate in Celiac Disease.   Switching to a low histamine diet for a while can give your body time to rid itself of the extra histamine the body makes with Celiac disease and histamine consumed in the diet.   Vitamin C and the eight B vitamins are needed to help the body clear histamine.   Have you been checked for nutritional deficiencies?
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.