Can others relate?

[christen1122]

Trying to pinpoint if gluten has been causing my ongoing health issues that have led up to my 42 years. I always felt I had way too many random  health issues that popped up along the way. Breakdown of list:  1. Always had fatigue that was chronic at times starting in my early 20's. 2. Bloating, indigestion and back and forth constipation/diarrhea were not abnormal starting in my early 20's. I started a probiotic which helped ease the constipation.. Always just dealt with the issue thinking I had IBS. I've never had vomiting or severe stomach pain though. 3. Was diagnosed with anxiety at 25 with no known trigger and started on an antidepressant. 4. Had my first flare of Interstitial Cystitis at 23 that was almost unbearable. You have the constant feeling you need to urinate, some comes out, yet the feeling doesn't subside. Started on Elmiron 7 years later after 2nd big flare. Had many small flares in between.  5. Restless leg diagnosed mid 20's. Went years just dealing with it until recently put on Gabapentin.  6. Recently had to start on Pepcid due to acid reflux. 7. Menstrual periods in my mid 30's became heavier and eventually got so ridiculous I had to have an IUD inserted last year. I went through an entire box of tampons at the heaviest flow. 8. Neck and back issues have plagued me for years.  My back has gone out 4 times and my neck is constantly stiff and sore. 9. Just a month ago I noticed tingling/numbness in my hands and feet.  My antidepressant dosage had to be increased because my anxiety returned out of nowhere. I am so easily startled at noises like car doors slamming, etc. . I have a constant mild headache.  Outdoor allergies which never bothered me seem to be becoming an issue. Sorry this was crazy long just trying to be thorough.  I'd love to hear from those that have had a similar checklist of issues. Thanks.

[trents]

Welcome to the forum, christen1122!

Many of the symptoms you describe are classic Celiac Disease symptoms. celiac disease not only causes direct GI distress but also creates vitamin and mineral deficiencies which in turn often result in bone demineralization and neurological problems. Something called "leaky gut" is part and parcel of celiac disease. Leaky gut allows larger than normal food protein fractions to cross into the blood stream where they are detected by the immune system as invaders. This explains whey Celiacs often develop allergies/sensitivities to other foods besides gluten containing ones. In other words, celiac disease often results in a dysfunctional, hyper vigilant immune system. It is also true that the genes for celiac disease are found in the same area of the genome map as other common autoimmune diseases such as diabetes.

I'm not saying that all of your medical issues are necessarily being caused by celiac disease as you may have more than one thing going on. But most of the symptoms you describe are common to Celiac Disease. Perhaps some of our female contributors can address more specifically your menses issues.

Definitely sounds like you should talk to your doctor about getting tested for Celiac Disease. Blood test for Celiac antibodies is the fist step and that may be followed by an endoscopy/small bowl biopsy for confirmation. But - and this is very important - don't attempt to start eating gluten free until the testing is done as that would invalidate the tests.

[Scott Adams]

It is interesting that you have had severe neck and back issues. One thing that I need to update in my own story is that I had severe neck pain for over 5 years after my diagnosis. I always blamed it on my desk job, and working to much on a computer. Since my work patterns haven't changed much since the time of my diagnosis, but the neck issues finally went away, they may have been related to my diagnosis. 

I've not seen specific studies on this topic, and I wonder how many others with celiac disease experience neck and back pain, probably triggered by malabsorption?

In any case, you should definitely be screened for CD, and please let us know how it turns out.

[christen1122]

I should also note I just had iron, B12 and thyroid blood work last week. All came back in normal ranges.

[cyclinglady]

55 minutes ago, christen1122 said:

I should also note I just had iron, B12 and thyroid blood work last week. All came back in normal ranges.

Did you get a complete thyroid panel which includes antibodies?  My thyroid panel was normal except for very elevated thyroid antibodies.  It took a long time before I really needed thyroid hormone replacement.  Also, except for iron (just ferritin),  I had no deficiencies.  Not all celiacs are malnourished.  

[Kate333]

Hi Christen.  I have experienced some of the symptoms you described, but I also know from my own experience that my chronic, severe stress, depression, insomnia can be big factors in either triggering or magnifying physical problems (esp. fatigue, muscle aches/pains, neuropathy, headaches, IBS).

If you get a TTG test and it's normal, you might want to assess your lifestyle (stress levels, sleep habits, diet, exercise, mood).  Like the gut, the brain controls and influences so many body functions.  In fact, extreme stress has been discussed among the medical community as a "trigger" in "activating" celiac disease and other AI disorders.

BTW, which probiotic did you use that helped with constipation?  

    

[christen1122]

3 hours ago, Kate333 said:

Hi Christen.  I have experienced some of the symptoms you described, but I also know from my own experience that my chronic, severe stress, depression, insomnia can be big factors in either triggering or magnifying physical problems (esp. fatigue, muscle aches/pains, neuropathy, headaches, IBS).

If you get a TTG test and it's normal, you might want to assess your lifestyle (stress levels, sleep habits, diet, exercise, mood).  Like the gut, the brain controls and influences so many body functions.  In fact, extreme stress has been discussed among the medical community as a "trigger" in "activating" celiac disease and other AI disorders.

BTW, which probiotic did you use that helped with constipation?  

    

Renew life ultimate flora probiotic 

[Awol cast iron stomach]

On 10/5/2020 at 12:20 PM, Scott Adams said:

It is interesting that you have had severe neck and back issues. One thing that I need to update in my own story is that I had severe neck pain for over 5 years after my diagnosis. I always blamed it on my desk job, and working to much on a computer. Since my work patterns haven't changed much since the time of my diagnosis, but the neck issues finally went away, they may have been related to my diagnosis. 

I've not seen specific studies on this topic, and I wonder how many others with celiac disease experience neck and back pain, probably triggered by malabsorption?

In any case, you should definitely be screened for celiac disease, and please let us know how it turns out.

Back and neck issues here. I started going to chiropractor's in my early 20's. Still see them now, although my treatment has moved to acupuncture as it helps my nerve/nervous system better. 

My chiropractor's for years had me on magnesium and probiotics (before they became OTC / mainstream) for my muscle and gi issues.

 

[trents]

I can relate to this issue big time right now. For about a week now I have had stiff neck and major neck pain. Just woke up one morning and the neck was stiff and sore on one side. Within a couple of days it spread to the other side. It is somewhat better but I still can't turn my head more than a few degrees. I've had this issue before but not nearly so acute or lasting so long. I went to primary care several days ago and she told me to alternate heat and cold, practice range of motion exercises as I could tolerate and prescribed me a muscle relaxer and an opiate for pain. Things I was already doing. "Come back in a week if it's not resolved," she said. 

Now I have known for years I have degenerative disk disease (DDD) which I attribute to years of undiagnosed Celiac Disease. Until now, it has only given me minor trouble. The pain is mostly at the base of my skull and the odd thing is my scalp is tender as well but with no external signs of distress. I googled these symptoms and came up with occipital neuralgia.