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. Jay Heying
      - Jay Heying replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    2. Florence Lillian
      - Florence Lillian replied to Jay Heying's topic in Gluten-Free Foods, Products, Shopping & Medications
      6

      Celiac friendly probiotics

      In response to your questions regarding probiotics. I have had Celiac for 40 years. Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything. I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference. After reading about people with Crones, IBS, etc, who made...
    3. slkrav
      - slkrav posted a topic in Introduce Yourself / Share Stuff
      0

      Gluten free beer ?

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    4. cristiana
      - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      16

      Ibuprofen

      Ferritin levels. And see what your hemoglobin looks like too, that will tell you if you are anemic? You can have 'low normal' levels that will not be flagged by blood tests. I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial...
    5. Mari
      - Mari replied to KathyR37's topic in Coping with Celiac Disease
      5

      New here

      Hi Katht - I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was...
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,883
    • Most Online (within 30 mins)
      7,748
    Jrgrimes914
    Newest Member
    Jrgrimes914
    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

    • Jay Heying
      Celiac friendly probiotics

      By Jay Heying · Posted

      Thank you so much for the advice!! I will try to make a batch this weekend. Have a great weekend,
    • Florence Lillian
      Celiac friendly probiotics

      By Florence Lillian · Posted

      In response to your questions regarding probiotics.  I have had Celiac for 40 years.  Stomach issues: digestion, IBS to chronic constipation, bloat after eating anything.  I was unable to eat a healthy variety of foods, tried probiotics supplements - some made me worse, others made no difference.  After reading about people with Crones, IBS, etc, who made their own probiotics I started making Milk Kefir: not water Kefir. There are 10 probiotics in milk KEFIR. After 3 weeks I was able to eat more, no gas, no IBS.  If you have a computer just ask for videos on making milk Kefir. I branched out and make my own Kombucha for even more probiotics. I do not make my yogurt because there are only about four probiotics in that. I started this when I was 82 and I still make my own Kefir and Kombucha. My stomach issues were fixed with the Milk Kefir alone. If you decide to try making it, make certain you order MILK GRAINS. The finished product tastes a bit like Buttermilk. I hope this helps in your journey to good health.
    • slkrav
      Gluten free beer ?

      By slkrav · Posted

      Help me out here. Lauren Dam gluten-free beer from Spain is listed as gluten free. Yet its made from Barley Malt. I thought barley and any form had gluten. Anybody have any more information about it?
    • cristiana
      Ibuprofen

      By cristiana · Posted

      Ferritin levels.  And see what your hemoglobin looks like too, that will tell you if you are anemic?  You can have 'low normal' levels that will not be flagged by blood tests.  I had 'low normal' levels, my lab reading was. c12, just over what was considered normal, but I had small benign lesion on my tongue, and sometimes a sore mouth, and a consultant maxillofacial ordered an iron infusion for me as he felt my levels were too low and if he  raised them to 40, it would help.   Because you are not feeling 100% it might be worth looking at your levels, then discussing with your doctor if they are low normal.  But I stress, don't supplement iron without your levels being monitored, too much is dangerous.
    • Mari
      New here

      By Mari · Posted

      Hi Katht -  I sympathize with your struggles in following a gluten-free diet and lifestyle. I found out that I had Celiac Disease a few months before I turned 70. I just turned 89 and it has taken me almost 20 years to attain a fairly normal intestinal  function. I also lost a lot of weight, down to 100 lb. down from about 140 lb. What Trents wrote you was very true for me. I am still elimination foods from my diet. One person suggested you keep a food diary and that is a good idea but it is probably best just to do an elimination diet. There are several ne and maybe one for celiacs. I used one for a while and started with plain rice and zucchini and then added back other foods to see if I reacted or not. That helped a great deal but what I did not realise that it would only very small amounts of some foods to cause inflammation in my intestine. Within the last few years I have stopped eating any trace amounts of hot peppers, corn and soy(mostly in supplements) and nuts, (the corn in Tylenol was giving me stomach aches and the nuts were causing foot pains). Starting an elimination diet with white rice is better than brown rice that has some natural toxins. In addition it is very important to drink sufficient plain water. You can find out how much to drink for your height and weight online. I do have difficulty drinking 48 ounces of water but just recently have found an electrolyte supplement that helps me stay well hydrated, Adding the water and electrolytes may reduce muscle cramps and gag spams you wrote about. . Also buy some anti-gluten enzyme capsules to take with meals. I use GliadinX advertised here. These are a lot of things to do at one time as they reflect my 20 years of experience. I hope you do what you can manage to do over time. Good luck and take care.
×
×
  • 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.