Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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 Celiac.com!
    eNewsletter
    Donate

Osteoperosis and Thyroid Issues


kalo

Recommended Posts

kalo Rookie

Hi Nita. I'm only 55 and have osteopenia (diagnosed several years ago). My grandmother had SEVERE osteoporosis and I wonder now if she had celiac. I've read that untreated celiac can lead to it. Maybe once your intestines heal you will improve. I've also taken Armour thyroid since last August. Armour has calcitonin in it which helps the bones. I had another dexa scan earlier this year after I fell and broke my foot. While I'm still in the osteopenia range I wasn't any worse and if I read the test right I'm a little better (on account of the Armour). Sorry to hear about your tiredness. That's been a way of life for me and I hope it goes away after I've been gluten-free for a while. Still waiting my test results from enterolabs. If they haven't sent them by next Wednesday (4 weeks from when I sent it to them) I will e-mail them. Definately don't think I'll be looking for a nutritionsist. LOl Hugs, Carol B

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Guest NitaB

Carol,

Thanks! It's good to hear from others in this boat! Helps, believe me!

My Dr. appt. today was a bum's rush for me. I am so disappointed in Dr's! I did get samples of Evista for osteoporosis, for a month. The Dr. chose this one, as it's not as hard on the digestive system, compared to Fosamax. She still really thinks I have Gerd and IBS only! I asked her if the osteoporosis was caused by malabsorption from celiac disease. She said no, it hasn't even been proven I have celiac disease! I told her how tired I was. She said to walk more anyway! I give up, why am I on this hard diet, if no one thinks I really have celiac disease????? I'd like to know what she thinks caused the lesions, that have flattened villi, and looks like celiac disease????? She was in a hurry to get me in and out, that I didn't get all my questions asked. I sure wonder what we pay for sometimes! :angry:

Well now I'm done ranting, for the moment, anyway!!! :rolleyes:

Carol, I hope you get your results back soon! I can't believe you're still waiting! Keep us posted!

Nita

Link to comment
Share on other sites
celiac3270 Collaborator
My Dr. appt. today was a bum's rush for me. I am so disappointed in Dr's! I did get samples of Evista for osteoporosis, for a month. The Dr. chose this one, as it's not as hard on the digestive system, compared to Fosamax.

If you do feel strongly that you are a Celiac, and therefore, are on an entirely gluten-free diet, make sure that "Evista" is gluten-free, also....many medicines aren't.

Link to comment
Share on other sites
kalo Rookie

Hi Nita. I WOULD NEVER take meds for osteopenia/osteoporosis. They havent been proven yet and what about side affects. If it's from celiac disease it should reverse if your intestines aren't to far gone once you start absorbing calcium. I would think so anyways. Could also be from low thyroid. Have you had your thyroid tested by a reputable doc? i.e. TSH, FT3 and FT4. If the TSH is 2 or higher you have a problem and the FT3 and FT4 should be in the upper part of the range and higher. that can also cause tiredness. Yes, I cant believe I'm still waiting either. I do know that they have a backlog due to the increased number of people wanting their test. It took over a week for the kit to even get to me and thats what they told me. So I'm giving them the benefit of the doubt. Wednesday they will hear from me if I haven't heard from them yet. That's only because one gal told me her results came in 4 weeks. Another thing, it's time for a new doc. You might go to about.com's thyroid site (Mary Shommon). They have a listing of top docs who think out side the box with thyroid, maybe they also do so for celiac. Or post where you live and maybe someone knows a good doctor. Just a suggestion. Take care. Hugs, Carol B

Link to comment
Share on other sites
Guest NitaB

Hi Carol!

I just had a blood test with my regular physical. My thyroid is normal, as is my whole blood test, except for a bit high cholesterol. I'm not anemic, and they just aren't sure I have celiac disease! I am doing the gluten-free diet, and feel good, no more stomach pains. I'm just tired more than I should be! I made myself go to the family picnic today, and had a good time. I guess I just need to go, try to eat right, and make the best of it!

I am trying the Evista. I don't know if it's the right thing. But, my Dr. just thinks because I'm a small person (10 pounds overweight, but short and not heavy!) that I'm the type that gets osteoporosis and my body doesn't assimilate calcium or the hormones I just quit taking!!!! Yes, I got this, while taking hormones for the last 5 years! I happen to think I didn't get use of these things, due to celiac disease and the lesions! I don't know why she wouldn't think that! Odd situation and unsettling.

Thanks for your reply! I'm still waiting to hear what you find out!

Thanks celiac3270 for your comments. Yes, I need to do the gluten-free diet, just to feel better, and prove that I do, on the diet!

NIta

Link to comment
Share on other sites
kalo Rookie

I should warn you that just because your doctor says your thyroid is normal doesn't mean it is. I have learned so much this past year that I never knew. You might go to about.com and type in thryoid and read and see what you think. Just a wild suggestion. LOL Hugs, Carol B

Link to comment
Share on other sites
celiac3270 Collaborator
My grandmother had SEVERE osteoporosis and I wonder now if she had celiac

I meant to mention this in my other post, but forgot to: my grandmother has SEVERE osteoporosis....the worst her doctors have EVER seen....lots of bone/back issues. For example, on her spine, she has not only osteoporosis, but also scoliosis and some other things that I can't pronounce. She also weighs very little, bordering 100 pounds (and she was, at one point, very tall: 5'11"...but now she's shrunk a bit from the osteoporosis). I think the low-weight, in addition to osteoporosis made her a good candidate for celiac disease, but of course, at 80 years, undergoing a dramatic diet change isn't worth it...... :( Anyway, she did go get the bloodtest cause she wanted to know. It turns out that she "doesn't have it", although, who knows what a scope would have said -- like I said, before, though, it's not worth changing the diet, anyway -- so no point of the biopsy...and, she has enough tests being run on her...she doesn't need anymore to check if she has something that isn't worth changing anyway at 80 years old....since your intestines don't turn around in a day......:(

While in a Osteoporosis and Thyroid thread, my mom has to take a pill for her thyroid (too slow, but I don't know what it's called....the most scientific I can get is that it doesn't produce rhodopsin, so she gets it in a pill...etc.; a common thing). She, also, "doesn't have Celiac" although I'd say that some of her symptoms match celiac disease. Bloating after eating a lot of gluten (like a big subway sandwich, or something with a lot of bread like that). She also had stomach problems as a child; like I had as my main symptom. She would have cramps sometimes as a kid (my main and worst symptom). In addition, she had a symptom that a Celiac I know also has. She would, after dinner, feel really nauseous, and run to the bathroom, vomit, and then come back and feel fine. Another Celiac I know has the same thing (make that: HAD the same thing...his symptoms have gone away).

Finally, my brother has the same "figure" as I do....he weighs the same as I did at his age, is really skinny despite eating a lot (he eats a good dinner, then has a HUGE "dessert": a few pieces of watermelon, a big bowl of ice cream, sometimes some fudge cake or brownies, and this rather gross "Pirate's Booty" (a type of "popcorny" thingy covered in cheese...I think it's disgusting, but he loves it). And yet, he doens't gain a lot of weight. Since the diet I've gained 10-15 pounds so I no longer look grotesquely thin, but rather, like a skinny kid -- I could use another 10 pounds.... :) ....anyway, my brother isn't sick, but because of his figure/weight, I thought he might be an unsymptomatic Celiac....two blood tests were done....and he's "not a Celiac". Funny, I'm supposedly the only Celiac in my family, and yet, I'm living amongst people who look like they have it!...crazy!!!

-celiac3270

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



kalo Rookie

That's quite a story celiac3270. Has your family thought of doing the enterolabs test. Sure would make sence that if you have this they could too. Hugs, Carol B

Link to comment
Share on other sites
strack2004 Rookie

Hi! I'm brand-new today to the board. I can relate to so many of the things I have just read! My first remembered experience with digestive problems was a vomiting siege I had as a 4-5 year old. It was severed enough so that I was taken to the hospital. Throughout childhood I was given enemas with soapsuds for constipation every once in awhile. My parents apparently also had problems because they kept something called blackberry balsam in the medicine cabinet, and also various medicines to combat constipation. As a teenager I took over my own bowel stuff including enemas. I had sessions of extremely painful stools all day , not sure just how frequent, but often enough. I would sit in the bathroom and cry. Would take Blackberry balsam to stop it and then various medicines to start up again. Before going to college, I got to a doctor who gave me penicillin. After that the painful sessions stopped. Eventually I was given Zymenol to combat constipation . that is a mineral oil, vitamin B preparation . Can't get it any more and anyway, mineral oil isn't a good way to go. (ha!) . I have gone to various clinics since then. Finally received diagnosis of ibs at Mayos. Not a big help as you all know! Now I am being tested for Celiac . Have had the blood tests. Will decide about the scope thing after the results come back. I also have gerd. Had my gall bladder removed last Feb. Did not help any of my symptoms. I am lactose intolerant as well. If all the tests come back negative, I think I will go on the diet anyway since false negatives seem to be common. And one can be intolerant of those grains without necessarily being a true celiac. Have any of you read the book "Dangerous Grains" by James Braly and Ron Hoggan? I don't go along with all they have to say, but there is quite a bit of good stuff about celiac. Incidentally,

I am 75 years old and still tutoring and helping our teachers at school. I walk alot in spite of quite a painful right heel. Hope , even at this late date to get a better handle on my digestion problems with the Lord's help. These boards on the internet are a real blessing. Ruth

Link to comment
Share on other sites
celiac3270 Collaborator
That's quite a story celiac3270. Has your family thought of doing the enterolabs test. Sure would make sence that if you have this they could too. Hugs, Carol B

It would make sense to do some other tests....but the doctor's tested my entire family...my brother's been tested twice...and I think that everyone but me is convinced that he doesn't have it. The doctor thinks he's fine, my parents no longer suspect that he has it, etc. I don't know if they'd be too receptive to a suggestion of additional testing....:mellow:

am 75 years old and still tutoring and helping our teachers at school. I walk alot in spite of quite a painful right heel. Hope , even at this late date to get a better handle on my digestion problems with the Lord's help. These boards on the internet are a real blessing. Ruth

Wow, Ruth, so you've been having your symptoms for a long time.....71 years! This board is really helpful and informative....quick responses from people who not only know what they're talking about, but also understand what everyone here is going through, having similar issues, themselves....it's great.

-celiac3270

Link to comment
Share on other sites
  • 2 weeks later...
strack2004 Rookie

I just got back my celiac blood tests from Mayos this week. Forgot to put the paper back in my purse. But they were all very low ranging from 2 to 9 of the "normal" readings. My doctor doesn't think Mayos will be willing to do the biopsy after such low reading. I told him I intend to go on the celiac diet anyway. He suggested a dietician. I had that appointment. She felt I should try a modified diet, the one recommended by the Minnesota Health Department ( I think that's their title). It is quite a bit more lenient than the SCD diet I was contemplating. The dietician thought I should stay on the Minnesota diet for a few weeks then try the diet list I found on www.celiac.com. and finally the SCD diet. I guess I am inclined to go the other way. Start with the SCD and gradually add things after 6 months or so. The science behind the SCD diet seems to me to make sense. I don't anticipate great trouble following it. Have the dietician's guidelines for needed nutrients, calories, etc. I am also in process of concocting a letter to a Dr. I saw a few years ago in the GI depaartment at Mayos outlining my present problems, the gallbladder surgery with no relief, the now alternating diarrhea and constipation leaning more to diarrhea, I pass little small bits of stool first thing, progressing to large bunches of squiggles. Lately I have been experimenting with balancing magnesium and calcium supplements. This may be contributing to current problems if I haven't got the balance right. I do use a tablespoon of Milk of Magnesia at bedtime, half a 350 mg. calcium tab with each meal and a magnesium stearate capsule at breakfast. The bedtime M of M. seems to ensure that I do have a stool every day for the past week and the in between bits and squiggles is better caliber and more firm. I was also using stool softener at bedtime. Didn't do that last night and will keep on leaving it out. I really am torn between wanting to get a proper diagnosis and wanting to get off wheat. These squiggles of stool look to me like they are coming directly from my small intestine. I continue to have strong burning from esophagus to rectum and over to my right side ab. Will see my primary physician hopefully next Tuesday. They have same day appointments availablle after 3:30 p.m. the previous day. I get too long winded. Thanks . Ruth

Link to comment
Share on other sites

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - Scott Adams replied to Nacina's topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    2. - Nacina posted a topic in Related Issues & Disorders
      1

      14 year old with Celiac & EOE still suffering...

    3. - trents replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    4. - Fluka66 replied to Fluka66's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      5

      Waiting for urgent referral.

    5. - Moodiefoodie replied to Moodiefoodie's topic in Related Issues & Disorders
      9

      Joint swelling when ill even on gluten-free diet


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      121,067
    • Most Online (within 30 mins)
      7,748

    myneckmybackmyceliac
    Newest Member
    myneckmybackmyceliac
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Scott Adams
      It sounds like you've been through a lot with your son's health journey, and it's understandable that you're seeking answers and solutions. Given the complexity of his symptoms and medical history, it might be beneficial to explore a few avenues: Encourage your son to keep a detailed journal of his symptoms, including when they occur, their severity, any triggers or patterns, and how they impact his daily life. This information can be valuable during medical consultations and may help identify correlations or trends. Consider seeking opinions from specialized medical centers or academic hospitals that have multidisciplinary teams specializing in gastrointestinal disorders, especially those related to Celiac disease and Eosinophilic Esophagitis (EOE). These centers often have experts who deal with complex cases and can offer a comprehensive evaluation. Since you've already explored alternative medicine with a nutrition response doctor and a gut detox diet, you may want to consider consulting a functional medicine practitioner. They take a holistic approach to health, looking at underlying causes and imbalances that may contribute to symptoms. Given his low vitamin D levels and other nutritional markers, a thorough nutritional assessment by a registered dietitian or nutritionist specializing in gastrointestinal health could provide insights into any deficiencies or dietary adjustments that might help alleviate symptoms. In addition to routine tests, consider asking about more specialized tests that may not be part of standard screenings. These could include comprehensive stool analyses, food intolerance testing, allergy panels, or advanced imaging studies to assess gut health.
    • Nacina
      Hello, I am a 45 year old mom, who was diagnosed at 29 with Celiac. My now 14 year old son was diagnosed just before his 4th birthday. Needless to say, we are old pros with the diet. He was experiencing some issues, overall health took a major plummet a year ago, and through a bit of work, was diagnosed with EOE. Tried diet alone, but his follow up endoscopy didn't show the improvements his DR. wanted to see, so I tried the medication. (Steroid). He became extremely backed up, and they had him taking Miralax daily. His health plummeted. He is a straight A honor's 8th grader who plays club soccer very competitively. His health continued to decline and at 13 had a colonoscopy and another upper gi. (He was still compacted even with the prep). I finally pulled him off all meds and mira lax, after reading much negative literature online, and put him on a gut detox diet and took him to a nutrition response dr. Finally things have improved. However...over a year later and he is having relapse stomach pain, debilitating stomach pain. Missing a day of school a week, to three this week. This is where we downward spiral with him. He says it doesn't feel the same as when he has gotten backed up before. He is eating prunes, taking his supplements, drinking water...all of the things. Yet, he is feeling horrible. Pain is abdomen, headache, lethargy, diarrhea . He is on a strict gluten dairy, egg free diet. He has adapted well in regards to diet. But I feel like we are missing something here. He is too active, too outgoing to be feeling sick all of the time. His Bilirubin is constantly high. His white blood count always runs slightly low. His vitamin D was very low last time he ran tests, (last month) when he was sick for a week. His celiac markers show negative, so it isn't that. His last endoscopy showed no Eosinaphils in his esophagus.  I have taken him to multiple Ped. Gastro specialists. They run tests, and we get zero answers. I meticulously go through labs, hoping to make some sense and maybe catch something. Any thoughts or ideas would greatly be appreciated. 
    • trents
      But if you have been off of wheat for a period of weeks/months leading up to the testing it will likely turn out to be negative for celiac disease, even if you actually have celiac disease. Given your symptoms when consuming gluten, we certainly understand your reluctance to undergo  the "gluten challenge" before testing but you need to understand that the testing may be a waste of time if you don't. What are you going to do if it is negative for celiac disease? Are you going to go back to merrily eating wheat/barley/rye products while living in pain and destroying your health? You will be in a conundrum. Do I or do I not? And you will likely have a difficult time being consistent with your diet. Celiac disease causes inflammation to the small bowel villous lining when gluten containing grains are consumed. This inflammation produces certain antibodies that can be detected in the blood after they reach a certain level, which takes weeks or months after the onset of the disease. If gluten is stopped or drastically reduced, the inflammation begins to decrease and so do the antibodies. Before long, their low levels are not detectable by testing and the antibody blood tests done for diagnosing celiac disease will be negative. Over time, this inflammation wears down the billions of microscopic, finger-like projections that make up the lining and form the nutrient absorbing layer of the small bowel where all the nutrition in our food is absorbed. As the villi bet worn down, vitamin and mineral deficiencies typically develop because absorption is compromised. An endoscopy with biopsy of the small bowel lining to microscopically examine this damage is usually the second stage of celiac disease diagnosis. However, when people cut out gluten or cut back on it significantly ahead of time before the biopsy is done, the villous lining has already experienced some healing and the microscopic examination may be negative or inconclusive. I'm not trying to tell you what to do I just want you to understand what the consequences of going gluten free ahead of testing are as far as test results go so that you will either not waste your time in having the tests done or will be prepared for negative test results and the impact that will have on your dietary decisions. And, who are these "consultants" you keep talking about and what are their qualifications? You are in the unenviable position that many who joint this forum have found themselves in. Namely, having begun a gluten free diet before getting a proper diagnosis but unwilling to enter into the gluten challenge for valid testing because of the severity of the symptoms it would cause them.
    • Fluka66
      Thank you very much for your reply. I hadn't heard of celiac disease but began to notice a pattern of pain. I've been on the floor more than once with agonising pain but this was always put down to another abdominal problem consequently I've been on a roundabout of backwards and forwards with another consultant for many years. I originally questioned this diagnosis but was assured it was the reason for my pain. Many years later the consultant gave up and I had a new GP. I started to cut out certain food types ,reading packets then really started to cut out wheat and went lactose free. After a month I reintroduced these in one meal and ended screaming in agony the tearing and bloating pain. With this info and a swollen lymph node in my neck I went back to the GP.  I have a referral now . I have also found out that acidic food is causing the terrible pain . My thoughts are this is irritating any ulcers. I'm hoping that after a decade the outlook isn't all bad. My blood test came back with a high marker but I didn't catch what it was. My GP and I have agreed that I won't go back on wheat just for the test due to the pain , my swollen lymph node and blood test results.  Trying to remain calm for the referral and perhaps needed to be more forceful all those years ago but I'm not assertive and consultants can be overwhelming. Many thanks for your reply . Wishing you all the best.
    • Moodiefoodie
      Wow! Fascinating info. Thanks so much! I really appreciate the guidance. @Spacepanther Over the years I have had rheumatologists do full lab work ups on me. They told me they had screened me for arthritis, lupus, and Lyme disease (all negative). In addition to joint pain and stiffness I had swelling in both knees that later moved to my elbow as well.  I also experience stiffness and pain in my neck and shoulders when it flares. I vomited fairly often growing up, but there wasn’t a real pattern to it and I didn’t know it wasn’t normal (thought people caught stomach viruses often).  I don’t usually have stomach symptoms immediately after eating gluten that I notice.  The only other joint condition I know of is fibromyalgia. Good luck! Hope you can get it figured out. I only assumed my joint symptoms were due to the celiac’s because it is under control for the most part on a gluten-free diet.  The rheumatologist also mentioned that some inflammatory/autoimmune diseases can be slow-moving and not detectable until they progress.
×
×
  • Create New...