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

I Think I Might Have Hashimoto's - What Test Should I Ask For?

HavaneseMom

By HavaneseMom
in Related Issues & Disorders

Recommended Posts

cyclinglady Grand Master
cyclinglady
Posted

Yep, you might not have Hashi's or you might, but first, you need to resolve your Vitamin D and Ferritin levels. Solve one issue at a time. I stopped supplements six months after my dx because my levels improved to normal. I get most of my nutrients from whole foods and take calcium, magnesium and Vitamin D in one supplement for osteoporosis. That is it!

Has a Vitamin b-12 level been ordered?

Have you had any follow-up celiac disease blood testing to insure you are compliant? Are you in a 100% gluten-free household?

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

Celiac.com Sponsor (A8-M):


icelandgirl Proficient
icelandgirl
Posted

That's discouraging isn't it? (((Hugs))). The ferritin and D are definitely low. Did he give you an amount to take to supplement?

As far as the thyroid stuff goes...The #s are within range. The free T4 is pretty low unless your reference range is really different from mine. Mine is usually around 1.35. But none of that means you do or don't have Hashis. If it were me I'd still request the free T3 and thyroid antibodies...but that's just me. I have this need to know. Lol!

I'm frustrated for you...it's got to be hard to have the nutritional deficiencies not improving. You always want to see improvement. Maybe something is going around causing frustration...I've got a lot of that going on too!

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Hi cyclinglady - It is so great that you were able to get you nutritional deficiencies corrected so quickly and were able to stop supplementing! I am going to work hard extra hard now to get my numbers up through supplements and food. I have had my B-12 tested and i was pleasantly surprised it was pretty high at around 700. I last had my Celiac panel ran about 10 months ago and everything looked great, I'm due for another in a couple of months. My husband does eat gluten, but his gluten prep area is on the far corner counter of the kitchen and everything is segregated as recommended for a safe shared kitchen. We are very careful about it and no kisses are given until he brushes his teeth and rinses very well :)

icelandgirl - It is pretty discouraging! My regular doctor told me to take 5000iu Vitamin D3 for two months, then have my levels re-tested to see where to go from there. My gastro doctor was the one who ordered the Ferritin and he hadn't had a chance to review my results yet when I called for them, so I don't know what he will want me to take. I can come back and let you know when I find out because I know you are in the low Ferritin club and might be curious to know what is recommended. I am still going to push for the additional thyroid test because I do want to know that there isn't anything else going on there. Sorry to hear you are frustrated too!

I know this topic started off heading in one direction and is ending up in a completely different direction, so thank you to everyone for helping me sort all of this out!

I have been racking my brain trying to figure out why my levels dropped, and have been researching like crazy today and I think I realized what the problem likely is. I am taking Nexium everyday and have been for the past 5 years. I know, I know...it's bad stuff. Pre-diagnosis I woke up one day with what felt like a flame torch blowing up my throat. It was so bad and painful that I couldn't function, so I was prescribed a Proton Pump Inhibitor. There was some visible tissue irritation in my esophagus when I was scoped so my GI doc told me to keep taking them to avoid Barrett's Esophagus. I have tried to get off them a handful of times and the burning and pain comes back. I take the lowest dose possibly, but it is very likely enough to keep me from absorbing nutrients. I'm going to try to wean off of them again and look for some natural alternatives to help along the way.

icelandgirl Proficient
icelandgirl
Posted

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

Hi icelandgirl,

I have calls in to both of the doctors to find out what I should take for my low Ferritin and will come back and let you know what they say as soon as I hear back from them.

Yep, I have read a lot of info saying that long term use of PPI's can stop you from absorbing nutrients. I think it has something to do with there not being enough acid in the stomach to break food down, so nutrients can't be absorbed. My GI docs nurse tried to tell me today that it's very rare for that to happen and that the doctor thinks my Ferritin is down because I must be eating gluten. This obviously made me very upset, since I am obsessed about being gluten free and protecting myself from hidden gluten sources. I am one of us celiacs who never even eats out because I won't risk the chance of cross-contamination. I put in a request to have my celiac panel tested just in case something is going on, but mostly because I want to prove him wrong. I wish he would have run the celiac panel first before accusing me of sneaking gluten. I would never ever sneak gluten.

I will try your tips for weaning off PPI's. I have been on them for so long now that I know it's going to be tough, but I know it is something I have to do to improve my overall health.

Thanks so much for the very sweet offer to PM you if I ever need to :)

cyclinglady Grand Master
cyclinglady
Posted

Wow! The drug info on PubMed specifically says your PPI interferes with many drugs including the absorption of iron! No wonder your ferritin levels have not improved!

HavaneseMom Explorer
HavaneseMom
Posted
  • Author

Wow! The drug info on PubMed specifically says your PPI interferes with many drugs including the absorption of iron! No wonder your ferritin levels have not improved!

Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be.

Could you tell me where I can find the PubMed info you referenced. I would love to read it.

Thanks :)

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

Celiac.com Sponsor (A8-M):


HavaneseMom Explorer
HavaneseMom
Posted
  • Author

I would love to know what he recommends for the ferritin. And do keep us posted on your other thyroid stuff.

Do PPIs keep you from absorbing nutrients? That stinks. I was on one for 6 weeks while treating h.Pylori. I was scared to come off because I kept hearing about a rebound effect. That didn't happen to me...but it is apparently fairly common. I do remember reading about weaning off. I was taking it twice a day. So weaning would have been 1 a day for a week and then 1 every other day etc. Not sure if that would work for you. Or maybe there are different dosages and you could step down slowly. Anyway...I hope this works for you.

I really do feel your frustration. Know that you are not alone! If you ever need to vent/chat, feel free to PM me.

Hi icelandgirl,

I heard back from both of the doctors nurses following up on the low Ferritin. My regular doc said to keep supplementing, but when I asked his nurse if he said how much I should take, she said he didn't and to just do whatever I can to boost it up.

My gastro doctor threw me for a loop and wants to do a follow up endoscopy and biopsy to see if they can find out why I'm not absorbing nutrients better yet. I'm not sure if he is thinking it could be refractory sprue or what, but I think it's still too early in the healing process to be worried about that, so I am going to put that off for a while longer. When I called in I had asked the nurse to ask the doc what I should be taking to raise my Ferritn at this point, but when she called me back she said there was nothing about it in his notes and to keep taking a supplement. She did say that they typically see a very slow improvement of Ferritin in Celiac patients.

Sorry I don't have better suggestions from either if them to share with you to increase your Ferritin.

I guess this is the downside of trying to bypass another appointment and do things over the phone. The info gets passed back and forth between the nurse and the doctor and the original question didn't get answered :)

icelandgirl Proficient
icelandgirl
Posted

Thanks havanesemom...totally agree on the frustration. I had a call in to my Dr about something and when the nurse called back it was quite obvious that something had been lost in the relaying of messages. Argh! I hope you have good luck getting your levels back up...any progress on getting off the ppi?

cyclinglady Grand Master
cyclinglady
Posted

Yes! That is what I was thinking too. I don't know why the nurse at my GI's office said it's not likely the cause. Everything I have read says it very well could be.

Could you tell me where I can find the PubMed info you referenced. I would love to read it.

Thanks :)

I can not find it but found another when I goggled low ferritin and PPI/Nexium:

Open Original Shared Link

Looks like PPI affect bones too!

This is not a good drug when you are recovering from celiac disease.

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. Scott Adams
      0

      What the College Dining Hall Experience Means for Students with Celiac Disease (+Video)

    2. sc'Que?
      - sc'Que? commented on Celiac.com Sponsor: Review's article in Product Reviews
      1

      Bold Taste, No Alcohol & Crafted to Remove Gluten: Daura Non-Alc Beer Takes Alcohol-Free Beer to the Next Level

      @Daura Damm: Can we get a gluten-free Imperial Oatmeal Stout, please? Please?!?
    3. Mari
      - Mari replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet official, the Health Director of...
    4. Jmartes71
      - Jmartes71 replied to Jmartes71's topic in Related Issues & Disorders
      21

      My only proof

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac...
    5. knitty kitty
      - knitty kitty replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      44

      Supplements for those Diagnosed with Celiac Disease

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together. Our bodies can make Taurine from meats consumed. Our bodies cannot make Thiamine and must consume thiamine from food. Meat is the best source of B vitamins like Thiamine. Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      132,549
    • Most Online (within 30 mins)
      7,748
    MKSolo
    Newest Member
    MKSolo
    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

    • Mari
      My only proof

      By Mari · Posted

      I think, after reading this, that you areso traumatized by not being able yo understand what your medical advisors have been  what medical conditions are that you would like to find a group of people who also feel traumatized who would agree with you and also support you. You are on a crusade much as the way the US Cabinet  official, the Health Director of our nation is in trying to change what he considers outdated and incorrect health advisories. He does not have the education, background or experience to be in the position he occupies and is not making beneficial decisions. That man suffered a terrible trauma early in his life when his father was assonated. We see now how he developed and worked himself into a powerful position.  Unless you are willing to take some advice or  are willing to use a few of the known methods of starting on a path to better health then not many of us on this Celiac Forum will be able to join you in a continuing series of complaints about medical advisors.    I am almost 90 years old. I am strictly gluten free. I use 2 herbs to help me stay as clear minded as possible. You are not wrong in complaining about medical practitioners. You might be more effective with a clearer mind, less anger and a more comfortable life if you would just try some of the suggestions offered by our fellow celiac volunteers.  
    • Jmartes71
      My only proof

      By Jmartes71 · Posted

      Thus has got to STOP , medical bit believing us! I literally went through 31 years thinking it was just a food allergy as its downplayed by medical if THEY weren't the ones who diagnosed us! Im positive for HLA-DQ2 which is first celiac patient per Iran and Turkey. Here in the States especially in Cali its why do you feel that way? Why do you think your celiac? Your not eating gluten so its something else.Medical caused me depression. I thought I was safe with my former pcp for 25 years considering i thought everything I went through and going through will be available when I get fired again for health. Health not write-ups my health always come back when you're better.Im not and being tossed away at no fault to my own other than shitty genes.I was denied disability because person said he didn't know how to classify me! I said Im celiac, i have ibs, hernia, sciatica, high blood pressure, in constant pain have skin and eye issues and menopause intensified everything. With that my celiac nightmare began to reprove my disregarded disease to a bunch of clowns who think they are my careteam when they said I didn't have...I feel Im still breathing so I can fight this so no body else has to deal with this nightmare. Starting over with " new care team" and waisting more time on why I think I am when diagnosed in 1994 before food eliminated from my diet. P.s everything i went through I did write to medical board, so pretty sure I will continue to have a hard time.
    • knitty kitty
      Supplements for those Diagnosed with Celiac Disease

      By knitty kitty · Posted

      @Scatterbrain, Thiamine Vitamin B1 and amino acid Taurine work together.  Our bodies can make Taurine from meats consumed.  Our bodies cannot make Thiamine and must consume thiamine from food.  Meat is the best source of B vitamins like Thiamine.   Vegetarians may not make sufficient taurine since they don't eat meat sources of taurine.  Seaweed is the best vegetarian source of taurine. Vegetarians may not consume sufficient Thiamine since few veggies are good sources.  Whole grains, legumes, and nuts and seeds contain thiamine.  Many of these sources can be hard to digest and absorb for people with Celiac disease.   You may find taking the forms of thiamine called Benfotiamine or TTFD (tetrahydrofurfuryl disulfide) and a B Complex will give the benefits you're looking for better than taurine alone.  
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @Jmartes71, I went to Doterra's site and had a look around.  The Doterra TerraZyme supplement really jumped out at me.  Since we, as Celiacs, often have digestive problems, I looked at the ingredients.  The majority of the enzymes in this supplement are made using black mold, Aspergillus!  Other enzymes are made by yeast Saccharomyces!  Considering the fact that Celiac often have permeable intestines (leaky gut syndrome), I would be very hesitant to take a product like this.  Although there may not be live black mold or yeast in the product, the enzymes may still cause an immune system response which would definitely cause inflammation throughout the body.   Skin, eyes, and intestines are all made from the same basic type of cells.  Your skin on the outside and eyes can reflect how irritated the intestines are on the inside.  Our skin, eyes, and intestines all need the same vitamins and nutrients to be healthy:  Vitamin A, Niacin B3 and Tryptophan, Riboflavin B2, Biotin B7, Vitamin C, and Omega Threes.  Remember that the eight B vitamins work together.  Just taking high doses of just one, vitamin like B12, can cause a deficiency in the others.  Taking high doses of B12 can mask a Folate B9 deficiency.  If you take B12, please take a B Complex, too.  Thiamine B1 can be taken in high doses safely without toxicity.  Thiamine is needed by itself to produce energy so every cell in the body can function, but Thiamine also works with the other B vitamins to make life sustaining enzymes and digestive enzymes.  Deficiencies in either Niacin, Vitamin C, or Thiamine can cause digestive problems resulting in Pellagra, Scurvy, and Gastrointestinal Beriberi.   If you change your diet, you will change your intestinal microbiome.  Following the Autoimmune Protocol Diet, a Paleo diet, will starve out SIBO bacteria.  Thiamine keeps bacteria in check so they don't get out of control as in SIBO.  Thiamine also keeps MOLDS and Yeasts from overgrowth.   Menopause symptoms and menstrual irregularities are symptomatic of low Vitamin D.   Doctors are not as knowledgeable about malnutrition as we need them to be.  A nutritionist or dietician would be more helpful.   Take control of your diet and nutrition.  Quit looking for a pill that's going to make you feel better overnight.  The Celiac journey is a marathon, not a sprint.   "Let food be your medicine, and let medicine be your food."
    • RUKen
      Are Lindt chocolate balls gluten free?

      By RUKen · Posted

      The Lindt (Lindor) dairy-free oat milk truffles are definitely gluten-free, and (last time I checked) so are the white chocolate truffles and the mint chocolate truffles. 
×
×
  • 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.