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

Anyone Else Diagnosed With Fibromyalgia Before Going Gluten Free?

Jamie10

By Jamie10
in Related Issues & Disorders

Recommended Posts

Jamie10 Newbie
Jamie10
Posted

Before I went gluten free, I had been diagnosed with fibromyalgia, and the pain had been pretty severe for about three years. I'd had intestinal issues my whole life, but I only know this now that I'm better, because at the time I thought it was normal.

I was told to try going gluten free by an Eastern medicine person (doctors couldn't figure out anything, so I thought I'd give it a shot) and the pain and my intestinal issues went away. I didn't know about celiac or that I could have a blood test/biopsy for it, but from what I've read, I probably have non-Celiac gluten intolerance since I got better really quickly after giving up gluten. In this case, I'm glad I didn't tell any MD what I was doing, because they probably would have told me that there was no point in going gluten free if my biopsy came back negative.

I was wondering who else might have had a similar experience? I know lots of people with fibro see a reduction in symptoms after giving up gluten, and I want to understand the connection more.

Also, I've been gluten free for a little over two years, and I've heard conflicting thoughts on the benefits of doing a gluten challenge, and I'd rather not do it, because I really don't want to feel that pain again, and I already know that being gluten free helps me. Thoughts on this?

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

Celiac.com Sponsor (A8-M):


lesliev523 Rookie
lesliev523
Posted

It was suggested by my primary doctor, because she just didn't know what else to call my wide array of issues. Originally she thought lupus, but I was ANA negative.

I went gluten free about two weeks prior to going to a different doctor. Once she had my history, symptoms, and I told her the relief I was starting to have she immediately told me to NEVER HAVE GLUTEN AGAIN.

That was two weeks ago. My constant, chronic pain is gone. My energy level is up. My brain fog is pretty much gone. My balance is better. And my hand tremors are almost completely gone.

Gluten is evil because it can cause so much havoc in the body!

Adalaide Mentor
Adalaide
Posted

With a lack of answers my doctor eventually called it fibro and we tried a couple of different medications with little to no benefit from them. At four months gluten free I can say that as long as I take it easy I have about as many good days as bad, which is a significant improvement. My ANA has always come back on the high side of normal and my doctor refuses to rule out lupus, especially since being gluten free hasn't turned me into a functioning human being yet. At any rate, I told my doctor I wanted to stop all fibro treatments, and honestly don't feel any different since stopping.

mamaw Community Regular
mamaw
Posted

My fibro issues has lessened since going gluten-free.I do still get flare-ups occas...

GF Lover Rising Star
GF Lover
Posted

Through the years I have been diagnosed with a wide variety of issues. First, I am bi-polar and have major depression, anxiety disorder, OCD and social phobias to name a few. I had a heavy drinking problem in my late twenties and a mental crash with too many pills that ended in ect treatments during a month In the hospital I have always had digestion issues, reflux, heartburn, bloating, cramping before finishing a meal, malabsorbtion and constipation that could only be controlled with the liquid they give you before a colonoscopy. I also have spinal stenosis, peri-formis syndrome with occasional sacroilitis. I have had more migraines than I can count. I was also dx with fibro some years back. I also have a hypoactive thyroid with nodules growing on it and an un diagnosed autoimmune disease. They talked lupus, sjogrens but nothing is sticking. I'm now experiencing neurological problems and am scheduled for an eeg and an emg. I sometimes think this may all be connected and other times I think its just to much to overcome. The gluten free diet has resolved all of the digestive issues but I'm afraid the other stuff is to progressed to get any better at this point. To say the least, this intolerance to certain foods is far reaching and evolving everyday. Take it all a day at a time and be well!

Greyhound Rookie
Greyhound
Posted

For me, the constant aching was the second worst thing (exhaustion being the worst) and I began to fear I'd developed fibromyalgia, but all information about it said it could be identified by certain points on the body being particularly tender; I didn't have these points.

So I wasn't dignosed with it but the pain became so bad that it did cross my mind more than once that it might be fibro.

Archived

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

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


  • Member Statistics

    • Total Members
      130,036
    • Most Online (within 30 mins)
      7,748
    Cynthia Carlson
    Newest Member
    Cynthia Carlson
    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

    • Wends
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Wends · Posted

       So sorry and sending well wishes. Replying from the UK. The NHS Coeliac Screen test is igAttg (including total igA). Your toddler is unlikely igA deficient with a titer of 22, as a positive test. When the igA anti-tissue transglutaminase antibodies are raised above the reference value or positive, the endomysial test is performed. The TTG test is suggestive of coeliac disease BUT it can be transiently raised in type 1 diabetes, milk protein intolerance (common in early childhood. Can also cause malabsorption similar to coeliac disease). Can be slightly raised in other food sensitivity and food allergy and some other conditions. Whilst it is more specific for coeliac disease than the older anti-gliadin test the EMA test gives a high specificity for coeliac, but labour intensive test so is checked when the TTG shows positive as a further confirmation of a likelihood of Coeliac. Sometimes in children the anti-DGP (deaminated gliadin peptide) igA and IgG are performed as more likely positive in childhood coeliac disease. Unfortunately less used test these days in favour of ttg test. Though in research studies still utilised in addition to ttg and EMA. It usually follows that the EMA test will be positive in active coeliac disease later than the TTG shows positive. It may be classic transient antibodies with type 1. Likely what the Dr is counting on to not worry you or put your child through unnecessary testing. it also takes time as in weeks/months for antibodies to build up. The new guidelines by Gastroenterology Society say in children coeliac can be diagnosed without biopsy if the ttg is ten times the upper value. Plus positive EMA. EMA is usually positive after ttg. It’s a good sign it’s negative and the Doctor is doing the right thing to retest in three to six months. It’s the only way for a definite diagnosis and whether further testing is needed (endoscopy and biopsy). The Doctor is taking the wait and see approach as it is common in type 1s for the TTG antibodies to normalise too, and will be following standard practice. Return to your Dr sooner though, if there are signs of malabsorption and sudden deterioration. It wouldn’t be unreasonable to request another blood test sooner with symptoms of coeliac. It’s a tough one. Have you a family history? Re type 1, Dr Bernstein book invaluable, and type 1 grit online. If you’ve not heard of this elderly type 1 Dr (diagnosed as a child) and his story already you need to. Sadly he recently passed in his 90s still practicing and treating type 1s and 2s. Wealth of info on his diabetes university you tube channel. Was the first to start testing blood glucose numbers at home, he was an engineer and retrained as a Dr. He gave the information to the world and diabetics that its possible to have normal blood glucose numbers and prevent the complications. The law of small numbers. Hope this reply is helpful.  
    • trents
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By trents · Posted

      Here is an article that gives an overview of all tests that can be used to detect celiac disease:    As you can see, the different tests vary in their degree of specificity and sensitivity. So, it is to be expected that if someone has celiac disease, not all the tests will be positive. Also notice that the tests break down into two large groups, IGA-based tests and IGG-based tests. There is also the EMA (Endomysial Antibodies) which is an older test and has largely been supplanted by he tTG-IGA which is less expensive to administer. So, when you report that the TTG score from your daughter's bloodwork is 22ku/l, we assume you are referring to the tTG-IGA test, which is the most popular test ordered by physicians when checking for celiac disease and considered to be the centerpiece test. However, you do not mention if there was a "total IGA" test run. Whenever the tTG-IGA is ordered, a total IGA should also be ordered to check for IGA deficiency. IGA deficiency will result in other IGA test scores, such as the tTG-IGA being artificially low, even falsely negative. This is especially true for young children. This is discussed in the article I linked. If your physician did not order total IGA test, this should have been done. Do you have a recourse for requesting such? I should also mention that you must not withdraw gluten from your toddler's diet until all testing for celiac disease is completed. Doing so would invalidate the testing.
    • Scott Adams
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By Scott Adams · Posted

      I’m so sorry to hear about your toddler’s recent Type 1 diabetes diagnosis, and I understand how overwhelming it must feel to now be navigating possible celiac disease as well. The slightly elevated TTG antibodies (22 ku/L) with normal endomysial antibodies could indicate a few things—sometimes, mild elevations can occur due to factors other than celiac disease, such as recent infections or even Type 1 diabetes itself. However, the symptoms you’ve noticed (changes in stools, itching, and hair thinning) could potentially align with celiac disease, so it’s understandable why you’re concerned. Since the consultant wants to retest in 3–6 months, it may be because they’re assessing whether the antibody levels persist or increase, which would strengthen the case for further investigation (like a biopsy). In the meantime, if your daughter’s symptoms worsen or you feel uneasy waiting, it’s completely reasonable to ask for an earlier review or a referral to a pediatric gastroenterologist for further advice. Keeping a symptom diary until the next test might also help track any patterns. You’re doing a great job advocating for your little one—trust your instincts and don’t hesitate to push for more clarity if needed. Sending you lots of support.
    • mytype1diabetes
      Toddler recently diagnosed with Type 1 diabetes and need help understanding coeliac screening test results

      By mytype1diabetes · Posted

      Hi all, Posting from the UK.  My 2 year old was recently diagnosed with Type 1 diabetes. In the UK they routinely screen for coeliac disease. The test showed slightly elevated levels of TTG antibodies. The consultant wants to repeat these antibodies in 3-6 months time to determine clinical significance. In our letter it said "marginally elevated TTG antibodies (22ku/l), normal endomysial antibodies". I'm not exactly sure what this means, especially given one of the tests were within the normal range, and if we should be worried about the numbers. It is difficult to know if she has any "symptoms" but at the time she was diagnosed with Type 1 diabetes I noticed that her stools had changed. They are now probably a Type 6 on the Bristol stool chart. She seems to be quite itchy which is a recent thing and over the past week I have noticed some hair loss/thinning. I feel very worried and I'm not sure I can wait for her to be retested in 3-6 months time.  I'd appreciate any wisdom, advice or information you have. Thanks 🙏🏼
    • slkrav
      Glutened from hair conditioner- check your body products and makeup !

      By slkrav · Posted

      I was feeling really sick last week, for several days I kept thinking I was getting cross contamination. Typical symptoms like not sleeping well at night and waking up with widespread inflammation in all of my joints, foggy head and of course bowel issues. I had read the article recently that was talking about body products. I was starting to get depressed. I was showering and decided to read the ingredients in the products I've been using. It turns out that two of the ingredients in my conditioning hair mask contain GLUTEN. I felt really stupid for not checking before and I threw that away and also checked the ingredients of everything else I've been using. I've heard of skin issues from gluten containing body products, but this opens up a whole new way if being proactive. 
×
×
  • Create New...