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 Our Content
    eNewsletter
    Donate

I Need Help Getting My Health Back


Li'l Buck

Recommended Posts

Li'l Buck Newbie

I'm new to this forum, but see there is a world of personal experience out there. I hope someone can help. I am 3 and a half years post celiac disease diagnosis and on a gluten-free diet. In that time, I have actually experienced moments when I could say I felt good; something I had not felt in over 20 years. My worst symptoms (feeling like I had food poisoning, brain fog and migraine headaches) are gone, but I am still experiencing frequent infections - sinusitus, u.t.i.s, pyelonephritis, pneumonia... and I have been on antibiotics on average 4-5 times a year for the last 4 years. I also take calcium, vitamin D, a multi vitamin, cranberry pills and probiotics. This year I was diagnosed with osteoperosis at 43, degenerative disk disease, osteo arthritis, two fractured vertebrae and I've been battling an infection with antibiotics since the beginning of July. This week my Dr. referred me to a gastroenterologist because he thinks I have an ulcer.

It seems everytime I recover, I begin to get an appetite and try to regain some weight, but then boom, it hits again and I'm back on the antibiotics. Each time, I lose a little bit of hope that it will ever improve and I know that does not help. My Dr. says I have two common problems right now and that I will feel better, but I'm not sure he is really looking at my file. When I told him I was having a hard time dealing with the constant illnesses, he said that was just because I'm not used to being sick. With all the bad news this year plus this never ending infection, I feel like I'm on a downslide. What can I do to turn this around?


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



Celiac.com Sponsor (A8-M):



KathiSharpe Apprentice

Three (no actually 4) things I would do, if I were in your shoes -

#1 - try Olive Leaf. It's a supplement that my Mom uses; she hasn't had a respiratory infection in years. WalMart sells a gluten-free version of the stuff very inexpensively.

#2 - get checked for parasites; look at sites like curezone.com and humaworm.com and cross-ref that info with your doctor (and if he poo-poohs the whole thing, consider self-treatment)

#3 - ask for a referral to a doctor who specializes in immune system problems. Long-term antibiotic use when the antib's aren't working indicates problems of some sort - either you're on the wrong ones, or you're not fighting infection the way you should, or something is going on.

he said that was just because I'm not used to being sick.

#4- Tell the doc that you don't plan on getting used to it, either, so he'd best send you to someone with a different attitude toward health and wellness.

ravenwoodglass Mentor

This may seem like a 'duh' question so please don't be offended if it is something you have already considered but....

Have you checked to make absolutely certain that any meds the doctor prescribes and all your supplements are gluten free?

I agree with the other poster who advised a referral to a specialist.

I hope you get to the bottom of this soon and that things improve.

Li'l Buck Newbie

Thanks very much for the advice. Re-reading my post, I am clearly suffering mostly from a case of feeling sorry for myself and I know there are many out there much worse off than I am.

I will look into the olive leaf it sounds promising. I will also look into parasites.

I have asked my doctor for referrals to specialists in the past and he seems reluctant. I have to see him tomorrow, but will see what he says. I live in an area with very few doctors accepting new patients, so shopping around is really not an option.

Li'l Buck Newbie

No offense taken - I totally understand why you would ask. I do check anything I ingest but am still amazed how many pharmacists don't know if their perscriptions are gluten free or not.

Thanks also for your hope that things improve soon - I've got my fingers crossed that my appointment tomorrow will be good news for a change.

JTerry Newbie

I have just been diagnosed with Celiac two weeks ago, but on a gluten-free diet for a month now. Fortunately I have been working on my health through natural therapies and supplementation for about 8 years now, so it was not too hard of a transition.

Since I am new to Celiac, I can't say a lot about it specifically. But 5 years ago my health spiraled out of control and on top of everything else I was dealing with, I developed hives from the top of my head to the bottom of my feet. It lasted 1 1/2 years. Miserable thing. I think it happened as the result of toxic overload when the company I worked for moved into a newly remodeled building, and I was exposed to all the out-gasing of toxins. I was already chemically sensitive and suffered terribly from sinus headaches and infections. After struggling with the hives for 6 months, I quit my job of 6 1/2 years.

The best my doctor could offer was steriods and benadryl. I don't typically do steriods (or any medications for that matter) but I did take them for 2 months, just to survive. I sought out natural therapies, and purchased an ionic footbath machine. I did footbaths every other day for a month and then twice a week for several months and then went to once a week. It did help a lot. I also took a good probiotic on an empty stomach in the morning and at night. Taking so many antibiotics as you have done, you really need a lot of probiotics. I also took digestive enzymes with meals and between meals. Taken with meals it helps you digest your food and reduces gas, bloating, heartburn, reflux, etc. Between meals it helps the body to heal it's different systems. I was highly allergic to pollen, and within a few weeks that went completely away. Nu-Zymes is the brand I use, and they work great. A little pricy, but I've seen them on Ebay for a fair price. I have checked with them, and they assure me they are gluten-free. Another product that I found to be remarkable for detoxification and really works great in conjunction with the footbath machine, is Natural Cellular Defense. It is a heavy metal detoxifier. This stuff worked miracles for me. I have not checked with the manufacturer "Waiora" to see if it is gluten-free. Heavy metals and toxins can wreak havoic on the body. I also did a parasite & colon cleanse, and I take some form of liver support daily. The best I have found is called DTX from Shaklee. I was over weight, and in doing the detoxificaiton program, I lost 20 lbs in 3 months....without trying. And that is something for me, because I have autoimmune thyroid disease. I am a firm believer in detoxification. And plenty of distilled water to flush out toxins...also keep the colon moving with daily healthy bowel movements.

I have found a great MD in our area who specilaizes in hard to diagnose and treat conditions. He guessed I had celiac on my first vist just from the medical history form he had me fill out. That was amazing, since I have suffered all my life with one health problem after another since age 5. I am 56 now, so that's a lot of suffering and a lot of doctors who never thought to check for gluten intolerance. He is in the Chattanooga, TN area. But there is a Clinical Nutritional Consultant with a PHD in nutrition, located in Asheville NC who has an awesome website with free podcasts n many topics, including gluten intolerance, and she will do consults over the phone. Her name is Liz Lipski. Her website is Open Original Shared Link. I was about to schedule a trip to see her when I decided to try Dr Terry Smith first. But honestly I had no idea he would be able to help me. I thought I had fibromyalgia, and he said I didn't in a quick 1 minute check. He specializes in that area, so I believe he knows what he is talking about. He said my thyroid disease was most likley caused by the celiac, and he thought we could possibly reverse it. WOW!

I hope this helps someone else. I know how frustrating it can be to have one thing after another with your health. It does take a while to find the right thing that works for you, and the right doctor who will work with you on your terms. Hang in there, and don't give up. But cleaning up the body from the inside out will help you tremenously. Another great line of products is the Miracle II Soap products. They are chemical-free and wonderful. I use the soap to bathe in, wash my hair, clean everything in my house. You gotta get the chemicals out of your house. Get a good ionic air purification system. I personally use AirSouce by Shaklee.

God Bless

Jean

Li'l Buck Newbie

Thank you so much for your suggestions. I will definitely look into all of this - it will help me feel like I'm doing something instead of sitting around waiting for the next bomb to drop and hopefully may solve some of these issues at the same time. Thanks for the hope!


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



Celiac.com Sponsor (A8-M):



Green Eyes Rookie

Hey, just wanted to put in my two cents worth. It took me months to find doctors that would work with me. When one acted like they didn't have a clue or didn't take me seriously - I found another one. In the end what I did find was a GI doctor that would work with me and a Chiropractor that got me back to where I needed to be.

I have had vitamin levels check to see which areas were low, bone scan, re-check celiac to see if I am with in normal range, and take supplements as needed. I am also your age and wasn't willing to take my health lightly. For the first time in 1 1/2 years I finally feel better. Because your immune system is low you are more likely to "catch" things. But there is end in sight - it is just being deligent to find what works for you.

The reason I sought medical help (then diagnosed with celiac) was my back issues. My neck was severly out of range, 8 vertebra out of alignment and a twisted pelvis. With the help of my wonderful Chiropractor (like doctors not all of them are the same) who was knowledge of celiac and works right with me to get me to the best health possible.

Best wishes on your journey...

Jennifer

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      130,700
    • Most Online (within 30 mins)
      7,748

    Ksc4kids
    Newest Member
    Ksc4kids
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Grahamsnaturalworld
      Where can I find a gastro in adelaide who can diagnose refractory celiac disease have seen 3 so far and don't understand the most obvious question, why my celiac symptoms did not resolve on a gluten free diet the symptoms just got worse as it is attacking my nervous system. 
    • ShariW
      I recently traveled to Spain and Portugal. I was with a tour group, they knew I needed to be gluten-free and made sure the kitchens preparing the group meals were aware. But just in case, I took Gliadin-X with me and took it for every evening meal - and most other meals. The one time I got glutened was from lunch early in the trip - had to be from cross-contamination. I had not taken Gliadin-X before that meal, which made for a pretty miserable day. Learned my lesson... 😞 
    • Hummer01
      Hi trents, thanks for the response.  The 2nd opinion doctor said that if my CRP is still elevated at that time, he would advise me to look at Crohns/UC or another autoimmune issue. The colonoscopy I had this year seemed to rule those 2 out for now so he still believed celiac may explain it. No previous doctors have suggested any explanation for it even after calling to tell me it was a concerning result.  I guess it feels tough knowing I have positive blood testing, permissive genetics, and visible duodenum changes... and somehow it's NCGS instead of celiac. I'm still surprised the biopsies came back negative when the doctor was so sure they would be positive.
    • trents
      "He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac." But with if the elevated CRP levels are caused by some other inflammatory process going on in your body? "She also said that my positive EMA isn't valuable because it has "a high false positive rate." Totally wrong! This is a highly accurate test for celiac disease, that requires specialized expertise to perform and interpret, and it is more expensive than other blood tests. It is generally used as a last test to confirm celiac disease after a positive tTG-IgA test. The sensitivity of a test refers to its ability to correctly identify individuals with the condition. For the EMA-IgA blood test, the sensitivity is generally very high, ranging from 90% to 98%. This means that the test can accurately detect celiac disease in a significant percentage of people who have the condition. The specificity of a test refers to its ability to correctly identify individuals without the condition. For the EMA-IgA blood test, the specificity is also high, typically around 95% to 100%. This indicates that the test can effectively rule out celiac disease in individuals who do not have the condition. Taken from the following article: Looking at the whole picture, I am wondering if you are transitioning from NCGS to celiac disease. Some experts in the gluten disorder field believe NCGS can be a precursor to celiac disease.
    • Hummer01
      Hi all, just wanted to post an update.  I have been gluten free for about 1.5 months now and seeing improvement already in the bathroom.  Recently I had a visit with another GI doctor for a 2nd opinion. He said that while my blood tests and scope are not a "slam dunk" for celiac, he believes it's more likely than not that I have it. His advice was to stay with a celiac-level gluten free diet (no CC) for 6-12 months then retest to make sure TTG-IGA is still negative. He also said that my CRP should return to a normal level at this time if the culprit was inflammation in the small intestine due to celiac.  Today I had a follow up with the original GI that performed the scope. She is confident it is NCGS and says I can still have gluten sometimes. When I asked about the visible duodenum damage, she said it is just "irritation" from gluten because the biopsies were negative. She also said that my positive EMA isn't valuable because it has "a high false positive rate."  I guess I'm having trouble reconciling the totally different advice from these 2 GI's. I want to believe the new doctor more at this point because what he said just makes more sense to me, and he gave an actionable timeline for possible next steps. Feeling lost and disappointed at this point and wanted to write it down here in case anyone has input. Thank you.   
×
×
  • Create New...