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

Ttg Levels Almost Triple After Eliminating Gluten?

alwaysafter8

Recommended Posts

alwaysafter8 Newbie
alwaysafter8
Posted

I was diagnosed with celiac April 27th, 2012.

Prior to this I had pretty much eliminated gluten (since Aug 2011), except for the "made in a facility" things & the occasional cheat (maybe once a month). When I got my TTG test results back, it was at 60.

I got home & immediately eliminated all the "made in a facility" items, only getting glutened a couple times (once in the first week after diagnosis & once about 6 weeks ago). Then 6 weeks ago, since I was still having symptoms, I cut everything & did an elimination diet, to see if there was another intolerance I had. I cut: corn, potato, nightshades, fruit, ALL grains, dairy, sugar, soy, pork, chicken, turkey, onion, garlic, anything packaged/processed.. and I've been VERY diligent. Everything I make is from scratch, anything that I eat that is packaged (spices, nuts/seeds) are stamped gluten-free. My diet is: vegetables (the ones I don't react to), coconut, beef, bison & fish. Fish & eggs make my DH flare up so I limit those. Nuts I seem to do okay with (thankfully!)

I have been neurotically avoiding gluten. Safe makeup, safe shampoo/condish/soap, safe medication/supplements... there's NO way I am having gluten (aside from the couple cc's I mentioned earlier). But there is NO WAY I am eating MORE gluten now, than I was prior to my diagnosis. Absolutely NO WAY. All I've done is cut things since being diagnosed. So, going in for my followup test, I wasn't expecting my numbers to go down a lot, but I was prepared for them to stay the same at the very least. I know healing takes time.

What I DID NOT expect, was to learn my TTG has jumped to 155!!!! My useless doctor says she's "not worried" about my huge levels & that "we'll retest in November". Oh, that's nice, but what about me in the meantime? Clearly what I am doing isn't working, either that or I might have some other autoimmune disease?

Or am I getting glutened because I stare a little too longingly at the cupcakes in the window when I walk past the bakery??? (kidding.... I think?)

Does grainfed beef have gluten in it? What about grainfed eggs? I'm SO confused.

I've had my thyroid TSH checked, it's fine. Sodium/potassium is fine. B12/D2 is fine. Calcium/magnesium okay. I have anemia, but I've been diligently taking my iron supps & my level has been slowly inching up. I have lower-than-expected bone density, but I've been taking calcium for it too. I'm taking a litany of supplements (all gluten free) to make sure I'm getting my nutrients even with this malabsorption thing.

What else can raise the TTG other than gluten? I haven't had a biopsy or any other celiac related tests done (AGA-IgA, etc)... because apparently my doctor is completely incompetent & I guess I am supposed to diagnose myself & ask for specific tests (like I did with the celiac thing). But, sadly, I'm not a medical doctor, I'm just a sick woman who is desperate & slowly (okay, quickly) losing all hope that I'll ever recover from any of this.

Frustrating! Where do I go from here? :(

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

Celiac.com Sponsor (A8-M):


alwaysafter8 Newbie
alwaysafter8
Posted
  • Author

Of course, I find out my ridiculously-high-TTG-results on the anniversary of 6 weeks into my elimination diet. Man, if I knew this super restrictive diet stuff wasn't helping AT ALL I would have just continued to eat my gluten-free grains/bread/muffins & been a whole lot happier! :rolleyes:

troykm Apprentice
troykm
Posted

I would suggest your Dr starts investigating. There are other health concerns that can cause your TTG to be high, its not exclusive to celiac. Maybe a few tests to rule out other causes is needed.

Good luck

beachbirdie Contributor
beachbirdie
Posted

Of course, I find out my ridiculously-high-TTG-results on the anniversary of 6 weeks into my elimination diet. Man, if I knew this super restrictive diet stuff wasn't helping AT ALL I would have just continued to eat my gluten-free grains/bread/muffins & been a whole lot happier! :rolleyes:

There are other autoimmune conditions that can raise your ttg, not just celiac. Thyroid disease is one of them, autoimmune hepatitis, Inflammatory Bowel Disease (like Crohn's), a couple of other things.

Your doc should be investigating to rule those out.

Newbee Contributor
Newbee
Posted

My situation is a little different but I've gotten similar responses from my GI doc. My TTG IGA did not go up after being gluten free but after 6 months on a strict gluten-free diet it was still positive (it went from 125 at diagnosis to 30). My doc had told me he expected I would test negative after 6 months. He claimed the test didn't necessarily mean anything and when I asked about other conditions keeping my score high (something I had learned about on this forum) he told me that the test was very specific for celiac so he didn't think anything else was causing it either. He assured me my continuing issues were celiac related. Even though he said the test doesn't necessarily mean anything I still have to repeat it. I would say no but I'm curious to see if it will go back to normal eventually. These doctors can be very frustrating! You could always try for a second opinion, I'm considering doing this.

Archived

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

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


  • Member Statistics

    • Total Members
      131,857
    • Most Online (within 30 mins)
      7,748
    LowellFrancis
    Newest Member
    LowellFrancis
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Rogol72
      Ibuprofen

      By Rogol72 · Posted

      Some interesting articles regarding the use of Zinc Carnosine to help heal gastric ulcers, gastritis and intestinal permeability. I would consult a medical professional about it's use. https://www.nature.com/articles/ncpgasthep0778 https://www.rupahealth.com/post/clinical-applications-of-zinc-carnosine---evidence-review https://pmc.ncbi.nlm.nih.gov/articles/PMC7146259/ https://www.fallbrookmedicalcenter.com/zinc-l-carnosine-benefits-dosage-and-safety/
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
×
×
  • 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.