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

Iga Anti-t.tg Levels Still High

Lisa79

Recommended Posts

Lisa79 Enthusiast
Lisa79
Posted

I had a recent follow up blood test IgA Anti-t.Tg and they came back at 26 which is still too high. They were 127 when I was first diagnosed.

For the last 4 months, I have been so careful with contamination and with what I eat, some people think I go overboard. But I don't want to risk anything. Now I am confused as to why?

Did anyone else have this problem? I saw my GP who just suggested going back to see the GI. I have an appointment in a couple of weeks.

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

Celiac.com Sponsor (A8-M):


ravenwoodglass Mentor
ravenwoodglass
Posted

It can take some time for the antibodies to leave your system. You have had a substantial drop in the last 4 months which shows your doing pretty good on the diet. How are your symptoms? Have they improved?

Lisa79 Enthusiast
Lisa79
Posted
  • Author

Thanks, since going gluten-free I have been feeling a little better, not 100% but improvement, bloating gone, headaches less often. I suffered major constipation prior to diagnoses which seems to have improved greatly since going gluten-free.

I am still having bad anxiety and lower back pain occasionally. The anxiety I have noticed really effects my digestive system too so thats something I am trying to get under control.

My 5yr old daughter has had a positive blood and goes for a biopsy in a few days. Which has added a little stress too.

Thanks for the reply :)

ang1e0251 Contributor
ang1e0251
Posted

I would say you've made great improvements. I've seen numbers from others who took a year or more to get where you are. You're to be commended on working so hard on your diet. Your daughter will reap the benefits of your diligence.

Lisa79 Enthusiast
Lisa79
Posted
  • Author

Thanks very much, thats made me feel alot more at ease, I have been worried, thinking what am I doing wrong and it should be right down, I didnt realise it could take a long time.

I think once DD has her biopsy we will have less chance of contamination as we will not have as much if any gluten in the house.

Thanks

Lisa :)

S-J-L Apprentice
S-J-L
Posted

Hi,

I am having the same problem-im so upset.

I got diagnosed around april last year and my levels were 164. Then in december it was 38, and now its 40 again. I can't think of where the gluten could be hiding!

I have major issues of being underweight-bmi of 16. The doctor doesnt see me putting on any weight until these levels are normal.

Am i allowed to eat food that says 'is produced on a line that produces gluten-containing products'??

ravenwoodglass Mentor
ravenwoodglass
Posted
Hi,

I am having the same problem-im so upset.

I got diagnosed around april last year and my levels were 164. Then in december it was 38, and now its 40 again. I can't think of where the gluten could be hiding!

I have major issues of being underweight-bmi of 16. The doctor doesnt see me putting on any weight until these levels are normal.

Am i allowed to eat food that says 'is produced on a line that produces gluten-containing products'??

I avoid anything processed on the same lines, a lot of us do. Another thing to look at is nonfood sources of gluten, if you haven't eliminated them already. Things like your toiletries, pet foods and litters, arts and crafts and home repair items can all be a problem. Check all your meds, OTC and script (generic are the biggest risk because they can change binders at will) vitamins, some will contain stuff like wheat or barley grass that are defined as gluten-free but that many will not tolerate.

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

Celiac.com Sponsor (A8-M):


marthamom Newbie
marthamom
Posted

Hi Everyone,

I'm in kind of the same boat---I was diagnosed in September '08; my antibodies were checked in January and were down to 39, and when they were just checked again at the end of June they were down a bit to 31, but still not "normal." It's really discouraging---I am really really careful about what I eat, so I'm hoping that it's just taking time and will keep going down to the normal range. I'm going on 11 months now since diagnosis---the whole process is much slower than I had thought it would be.

My house is not gluten free (my husband and 5-year old son aren't gluten free), but I try to be really careful--I use a different toaster, different colander, different pots for cooking pasta, etc., different cutting board. And I never put my food directly on the counter and am pretty compulsive about wiping the counters and washing my hands well after I make a sandwich for my son, etc. We do keep our dog food in the kitchen pantry---do you think that could be a problem? I usually dont' feed the dog, and if I do I wash my hands really well after I feed her.

I'm still having a fair amount of GI symptoms as well, which I guess may just be indicating that my intestines aren't well healed yet. When I was diagnosed, my doctor said that I had near total villous atrophy. On the plus side, I haven't had a migraine since I've been diagnosed, and my anxiety levels have been much lower in general......

...but not so low that I don't worry about ending up with refractory celiac, or thinking that the longer it takes my intestines to heal the more at risk I am for cancer, etc.....anyone else have the same worries?

Lisa79 Enthusiast
Lisa79
Posted
  • Author

I am extra careful, I try not to have anything that could have possible traces, I also am very anal at home with cleanliness, also having separate butters, jams, toasters, boards. Apart from the bread the whole house is gluten-free, but unfortunately bread is the most worst product for contamination.

I haven't seen the GI as yet, my appointment is on the 27th when he will probably do another test.

Check all Meds carefully, you may need to ring the pharmaceutical company, I have found out one I am taking could have gluten, but I have been told its so small traces. If my levels have gone up or not improved on my next test I will have to stop that medication.

Its so disheartening when you have tried so hard and then get so worried why they are not down to normal levels after more than 4 months.

oceangirl Collaborator
oceangirl
Posted

Hi.

It took two FULL years for my antibody levels to get in the normal range- AND, during that time, I ate ONLY whole foods I cooked myself from scratch. Because I am ridiculously sensitive (something I would never have believed until living through it) my family ultimately went gluten-free (two teenagers and my spousal equivalent) AND the 4 dogs, 5 cats are gluten-free as well. Only the bodasious in-house rabbit isn't (she gets some pellets with wheat every day but mostly fresh greens) This really helped with the constant cc. I am now 4 years in.

It takes time...hang in there,

lisa

LDJofDenver Apprentice
LDJofDenver
Posted
Hi.

It took two FULL years for my antibody levels to get in the normal range- AND, during that time, I ate ONLY whole foods I cooked myself from scratch. Because I am ridiculously sensitive (something I would never have believed until living through it) my family ultimately went gluten-free (two teenagers and my spousal equivalent) AND the 4 dogs, 5 cats are gluten-free as well. Only the bodasious in-house rabbit isn't (she gets some pellets with wheat every day but mostly fresh greens) This really helped with the constant cc. I am now 4 years in.

It takes time...hang in there,

lisa

I am so glad to read your post! My levels keep nudging down, but not any significant leaps and bounds. I thought it (the slow progress) may be because of occasional accidental glutening (something presumably "safe" at restaurant, a friend's house, etc.). Because I'm very careful at home with same precautions mentioned in other posts above, including washing my hands before and after almost everything! When I told my friends and husband that my latest re-check only came down one point they were flabbergasted. All said, "but you're so careful."

So I'm glad to hear that it took that long even for someone only eating whole foods. It will be a year in August for me.

heatherjane Contributor
heatherjane
Posted

At my support group meeting last week, our resident dietician stated the following in a presentation:

- The intestines can take up to 2 months to heal

- 3-6 months may pass before the individual begins to feel noticeably better

- Complete recovery can take up to 5 years in some cases

I can't remember her source for the info (I can ask at the next meeting), but it makes sense to me. I guess the key is just to stay diligent. I've been frustrated at my continually slow healing after 6 months gluten-free, but I've had several people tell me not to stress and just keep at it. You're on the right track by just being on this diet, and as you learn more, modify your lifestyle as necessary. Take it step by step, otherwise it will overwhelm you.

oceangirl Collaborator
oceangirl
Posted

LDJ,

Yes, it is a long road, I must say. But during those initial 2 years and even now I remind myself that I am insanely sensitive to gluten and accidental involvement with it seems difficult to completely avoid. But I feel the best I have in years (except from some annoying menopausal symptoms which I'm trying my best to ignore...) and when I do feel glutened, I always go back to my ABSOLUTELY trusted foods until it passes.

Good luck and good health to you!

lisa

LDJofDenver Apprentice
LDJofDenver
Posted
LDJ,

Yes, it is a long road, I must say. But during those initial 2 years and even now I remind myself that I am insanely sensitive to gluten and accidental involvement with it seems difficult to completely avoid. But I feel the best I have in years (except from some annoying menopausal symptoms which I'm trying my best to ignore...) and when I do feel glutened, I always go back to my ABSOLUTELY trusted foods until it passes.

Good luck and good health to you!

lisa

Thanks Lisa! Hopefully it will just keep coming along. It just gets frustrating when you know how careful you've been. Guess I was expecting to be fully restored to normal by now, and that's just not how it works.

Thankfully, I've got those annoying menopausal things behind me :P :P

Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,979
    • Most Online (within 30 mins)
      7,748
    volivier
    Newest Member
    volivier
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Wheatwacked
      Outgrow celiac?

      By Wheatwacked · Posted

      @Riley., Welcome to the forum.   It was once believed that Celiac Disease was only a childhood disease and it can be outgrown.  That was before 1951, before gluten was discovered to be cause of Celiac Disease, also called Infantilism.  Back then Cileac Disease was thought to be only a gastro intestinal disease, once you  "outgrew" the colicky phase, you were cured. You were so lucky to be diagnosed at 5 years old so your developing years were normal.  Gluten can affect multiple systems.  The nervous system, your intellegence. The muscules, skeleton. It can cause neurological issues like brain fog, anxiety, and peripheral neuropathy.  It can cause joint pain, muscle weakness, and skin rashes. Epilepsy is 1.8 times more prevalent in patients with celiac disease, compared to the general population. Because through malabsorption and food avoidances, it causes vitamin D and numerouus other essential nutrient deficiencies, it allows allergies, infections, poor growth, stuffy sinuses and eustacian tubes. There is even a catagory of celiac disease called "Silent Celiac".  Any symptoms are explained away as this, that or the other thing. Gluten is one of the most addictive substances we consume.  Activating the Opiod receptors in our cells, it can numb us to the damage that it, and other foods are causing.  It has become socially acceptable to eat foods that make us feel sick.  "There's a pill for that".   It is generally accepted that n fact you are weird if you don't. The hardest part is that if you don't eat gluten you will feel great and think why not.  But slowly it will effect you, you'll be diagnosed with real diseases that you don't have. You'll be more susseptable to other autoimmune diseases.  As you read through the posts here, notice how many are finally dianosed, after years of suffering at older ages.  Is it worth it? I think not. Perhaps this book will help:  Here is a list of possible symptoms:   
    • Riley.
      Outgrow celiac?

      By Riley. · Posted

      Hi! Im Riley, 18 years old and have been diagnosed for 13 years.. the testing started bc I stopped growing and didn’t gain any weight and was really small and thin for my age.  I got diagnosed when I was 5 and have been living gluten free since, in elementary and middle school it was hard for me and I kept contaminating myself bc I wanted to fit in with my friends so so badly. I ate gluten secretly at school and mostly regretted it 30 minutes later.  I’ve had symptoms like diarrhea, nausea, headaches, stomachaches, threw up a lot and was really emotional.  In 2022 I really started working on myself and tried to stay gluten free and if I did eat gluten I wouldn’t tell anyone and suffer in silence.  Last year in July I begged my mom to let me „cheat“ one day bc I just wanted to fit in… I ate a lot of different stuff, all the stuff I missed out on in my childhood like nuggets, pizza and all that.. I didn’t have symptoms that day and was doing really fine My mom and I wanted to test how far we can go and said we would test it for 12 weeks to get my blood taken after to see if I’m doing good or if symptoms start showing  As a now 18 year old girl who finally gained a normal weight and doesn’t get symptoms I’m to scared to get tested/my blood taken cuz I finally found comfort in food and it got so much easier for me and my family.  A year and 4 months later i still didn’t get any symptoms and have been eating gluten daily.  I’m scared to get tested/my blood taken cuz what if I’m actually not fine and have to go back to eating gluten free. Any tips to get over that fear and „suck it up“ cuz I know I could seriously damage my body… sorry if I seem like a idiot here… just don’t really know what to do :,)
    • Mari
      New Celiac Mama in My 30s

      By Mari · Posted

      There is much helpful 'truth' posted on this forum. Truths about Celiac Disease are based on scientific research and people's experience. Celiac disease is inherited. There are 2 main Celiac 'genes' but they are variations of one gene called HLa - DQ What is inherited when a person inherits one or both of the DQ2 or the DQ8 is a predisposition to develop celiac disease after exposure to a environmental trigger. These 2 versions of the DQ gene are useful in diagnosing  celiac disease but there are about 25 other genes that are known to influence celiac disease so this food intolerance is a multigenic autoimmune disease. So with so many genes involved and each person inheriting a different array of these other genes one person's symptoms may be different than another's symptoms.  so many of these other genes.  I don't think that much research on these other genes as yet. So first I wrote something that seem to tie together celiac disease and migraines.  Then you posted that you had migraines and since you went gluten free they only come back when you are glutened. Then Scott showed an article that reported no connection between migraines and celiac disease, Then Trents wrote that it was possible that celiacs had more migraines  and some believed there was a causal effect. You are each telling the truth as you know it or experienced it.   
    • tiffanygosci
      Aldi Pueblo Lindo Yellow Corn Tortillas

      By tiffanygosci · Posted

      Another annoying thing about trying to figure this Celiac life out is reading all of the labels and considering every choice. I shop at Aldi every week and have been for years. I was just officially diagnosed Celiac a couple weeks ago this October after my endoscopy. I've been encouraged by my local Aldi in that they have a lot of gluten free products and clearly labeled foods. I usually buy Milagro corn tortillas because they are cheap and are certified. However, I bought a package of Aldi's Pueblo Lindo Yellow Corn Tortillas without looking too closely (I was assuming they were fine... assuming never gets us anywhere good lol) it doesn't list any wheat products and doesn't say it was processed in a facility with wheat. It has a label that it's lactose free (hello, what?? When has dairy ever been in a tortilla?) Just, ugh. If they can add that label then why can't they just say something is gluten free or not? I did eat some of the tortillas and didn't notice any symptoms but I'm just not sure if it's safe. So I'll probably have to let my family eat them and stick with Milagro. There is way too much uncertainty with this but I guess you just have to stick with the clearly labeled products? I am still learning!
    • tiffanygosci
      New Celiac Mama in My 30s

      By tiffanygosci · Posted

      Thank you all for sharing your experiences! And I am very thankful for that Thanksgiving article, Scott! I will look into it more as I plan my little dinner to bring with on the Holiday I'm also glad a lot of research has been done for Celiac. There's still a lot to learn and discover. And everyone has different symptoms. For me, I get a bad headache right away after eating gluten. Reoccurring migraines and visual disturbances were actually what got my PCP to order a Celiac Panel. I'm glad he did! I feel like when the inflammation hits my body it targets my head, gut, and lower back. I'm still figuring things out but that's what I've noticed after eating gluten! I have been eating gluten-free for almost two months now and haven't had such severe symptoms. I ate a couple accidents along the way but I'm doing a lot better
×
×
  • 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.