Symptoms Continue

[Walter123]

I am to the point of getting more frustrated and even concerned that Dr.'s may not really know what is going on with me?  As I have posted, I was diagnosed to my surprise with Celiac several months ago; I was more or less asymptomatic besides seeing my PCP for a dry and scalloped tongue.

My PCP did various lab tests and after those results and a EGD scope found I had Celiac, Hashimotoes Thyroid and mixed medical opinions of Raynaud's? I began a Gluten Free diet and actually haven't noticed much change but actually progressively worse symptoms building.

I now have and itchy scalp, some general itchiness to my skin that comes and goes, recent hair thinning/loss and numbness tingling in my hands and feet at times.  My hands will turn cold then subside and get prickly and tingling.

I've consulted many Dr's and have no real definitive diagnosis other what what I've posted.  Of course, like may, at this point I begin checking online and concerns grow; do I have Lupus, MS, peripheral neuropathy ect?  Why can nobody tell me exactly what my body is doing and treat some of these symptoms?

They are looking to change my Thyroid medication to something with less "fillers" to possibly fix the hair loss and itchiness? I have been told to schedule with Neurology if the numbness and tingling in hands and feet continue.

I had my thyrid levels checked and were found to be "good"; I tried to have various other labs conducted to include Vitamin D, B12 and even Cortisol, but my insurance covers none of them saying they are experimental.

I don't know if all of this could be Celiac related, thyroid related or something more serious.  If anyone has any thoughts or similar experiences I'd appreciate the feedback.

 

Thanks,

 

 

[Ivana]

Hello,

I was also diagnosed a year ago by surprise, while checking for reasons behind anaemia. I would have never guessed that I had celiac. Before the diagnosis, anaemia was my only symptom, and shortly after I began experiencing some neurological symptoms (twitching, tension, ear pressure), as well as hair loss (maybe that was just because of the fall season - I am not sure - I was so concerned about my health after the diagnosis that I was suddenly noticing all sorts of "symptoms"). I went into the same mode you describe -  thinking it could be lupus, ms and what not. (You can see my first post here, which is similar to yours.) I even went behind my GP's back who thought I should just try to calm down first and only after some time investigate these symptoms further, and went to see a neurologist privately (it is not so expensive where I live). Since I was paying, they of course sent me for an MRI, where they found some non specific lesions, and then sent me for a bunch of other tests, including a spinal tap (I had to do this with my insurance, and the neurologist in the public hospital didn't think anything was wrong, but in order to give me peace of mind, approved the tap). Anyway, all these tests later nothing special was found, my symptoms are pretty much the same (they didn't progress or become worse in the past year), which makes me think it was all a stress response to the diagnosis, which kept being exacerbated by subsequent doctor visits. The symptoms you describe are also common for anxiety. Have they started after the diagnoses or where they there before? How did you take the diagnoses? Thyroid might be the culprit too, but again, why did the symptoms only manifest after you found out you had these conditions?

[Walter123]

Thanks for your reply; before the Celiac diagnosis I have visited the doctor for difficulty breathing where I nearly passed out, to later find after numerous cardiac tests it was a panic attack;  Over the past 5-7 years I would say I have has constant, chronic stress; family stress, marriage stress, job stress, health and more; we’ve relocated twice during this time, was in a bad car accident ect. I just keep pushing on but then find out my body is shutting down.  I wasn’t surprised to find out the stress caught up to me, but feel now I am somewhat better and just dealing with this new issue; maybe not, maybe I can’t shut down my stress responses.  For awhile I had short breath and a panic attack; once told by the Dr.s that it was nothing serious; it eventually subsided and I was better.

I wouldn’t be surprised if a lot was linked to stress, but how much is?  These are valid Heath issues that may just be magnified by stress?

 

thanks again

 

[Ivana]

6 hours ago, Walter123 said:

I wouldn’t be surprised if a lot was linked to stress, but how much is?  These are valid Heath issues that may just be magnified by stress?

 

 

 

I completely understand you and agree with you. This is a million dollar question that I have been thinking about for the past year. I also had years of chronic stress prior to the diagnosis, but I never had any physical symptoms. I actually always thought I was a very healthy person physically, although I was often anxious and sometimes depressed. I think the diagnosis sent me over the edge and brought up physical tension and associated symptoms that thus far I had managed to keep at bay. I do wonder of course, whether it is something else, such as undetected deficiencies due to celiac, or a neurological "glitch" triggered by stress. But I spent a lot of time on anxiety forums and groups and it seems that people can have similar symptoms and then recover once they are in a better place mentally (sometimes with the help of therapy or medicine). The anxiety centre website also claims this and I often go there and reread about my main symptom (tension around diaphragm and/or ribs and mid back) to get some reassurance. In the end I think doctors tend to overly (or completely even?) separate physical and mental aspects of our health, when I believe they are all part of one system, and constantly influencing each other. Living with these disconcerting aches (and wondering whether I am now forever "broken" or whether they will get worse) has been very difficult for me. Sometimes I think I might benefit from an anti depressant, as I feel my thoughts are always gloomy which then prevents me from relaxing. (Little digression: before I was diagnosed and when I was worried about persistent anaemia, thinking it might be some cancer, I occasionally felt tightness around my stomach which I could clearly connect to my mood. Once, after a few days of having it, I noticed it gone when I had gone out and had a good time with friends. But as soon I saw an ad for some cancer screening on the train on my way home, the tension was immediately back!) But I think I didn't give other methods a fair try yet. Less catastrophizing, rest, relaxation, mild exercise, healthy nutrition, hobbies, etc. Because even if it could be some organic defect that I developed, and not all in my head (but what is the difference, if you live in pain, right?), even the doctors will prescribe some medicine (with trial and error often), but also advise these other life changes  - which in the end might prove more beneficial. I think there is no quick pill, whatever it is. I think you should definitely pursue more tests (I might too) but if nothing is found, then you can only try to live in faith that you can slowly heal with a healthy life style and positive outlook, one day at a time, no matter what the cause. Good luck!

[Walter123]

Agreed; thanks for taking time to write; I can definitely minimize symptoms if I put myself in a good place; my environment allows little of that with tension at home and work; I have learned to take time for myself away from everything just to find some peace, as you know stress and it’s symptoms often occur after the events.

 Thanks again

[Jackie Garrett]

21 hours ago, Walter123 said:

I am to the point of getting more frustrated and even concerned that Dr.'s may not really know what is going on with me?  As I have posted, I was diagnosed to my surprise with Celiac several months ago; I was more or less asymptomatic besides seeing my PCP for a dry and scalloped tongue.

My PCP did various lab tests and after those results and a EGD scope found I had Celiac, Hashimotoes Thyroid and mixed medical opinions of Raynaud's? I began a Gluten Free diet and actually haven't noticed much change but actually progressively worse symptoms building.

I now have and itchy scalp, some general itchiness to my skin that comes and goes, recent hair thinning/loss and numbness tingling in my hands and feet at times.  My hands will turn cold then subside and get prickly and tingling.

I've consulted many Dr's and have no real definitive diagnosis other what what I've posted.  Of course, like may, at this point I begin checking online and concerns grow; do I have Lupus, MS, peripheral neuropathy ect?  Why can nobody tell me exactly what my body is doing and treat some of these symptoms?

They are looking to change my Thyroid medication to something with less "fillers" to possibly fix the hair loss and itchiness? I have been told to schedule with Neurology if the numbness and tingling in hands and feet continue.

I had my thyrid levels checked and were found to be "good"; I tried to have various other labs conducted to include Vitamin D, B12 and even Cortisol, but my insurance covers none of them saying they are experimental.

I don't know if all of this could be Celiac related, thyroid related or something more serious.  If anyone has any thoughts or similar experiences I'd appreciate the feedback.

 

Thanks,

 

 

Hello Walter

i have had some of your symptoms and with me it wasn’t Gluten intolerance it was Lactose intolerance, maybe try avoiding milk and dairy, there are many alternatives, I like the oat drink myself, it will take a while but I am sure you will begin to feel better, I do. Good luck 

[Walter123]

Ok, does that include cheese as well?

[Jackie Garrett]

14 hours ago, Walter123 said:

Ok, does that include cheese as well?

 

14 hours ago, Walter123 said:

Ok, does that include cheese as well?

Cheddar has less Lactose, you may be ok with that it just depends how sensitive you are to Lactose, I am extremely sensitive to it, I was ok with cheese up until recently I am now 52 so I sadly have to skip Dairy to be well ( believe me I do miss it)  I just have  alternatives. I think we just get a build up of acids and our bodies can’t cope with it and start to play up, (my opinion of course) but I know what to do to keep well and it is  by strict avoidance of Dairy with me  (and Lactose is hidden in so many things under different headings, you won’t be able to avoid it entirely) also check your medication it is very often in that too. It will take a while to feel a lot better but you may notice a change in some of your symptoms quite quickly if Lactose is your sensitivity. But do make sure you get your vitamins from another source of food/ drink as you don’t want to become deficient maybe speak to a nutritionist. I hope you get well.

[Walter123]

Labs were drawn today checking Vitamin D, Iron ect; family doctor also ordered some labs to detect inflammation; can anyone recommend a quality multi Vitamin for those with Celiac; my best hope is that nothing further is found and maybe I won’t lose all my hair; thanks 

[trents]

On 7/12/2021 at 12:07 PM, Walter123 said:

Labs were drawn today checking Vitamin D, Iron ect; family doctor also ordered some labs to detect inflammation; can anyone recommend a quality multi Vitamin for those with Celiac; my best hope is that nothing further is found and maybe I won’t lose all my hair; thanks 

Walter, I would definitely suggest you start on a good adult multivitamin and on top of that a high potency B-complex. Costco's Nature Made products are gluten free and of excellent quality. I would also add to that a gluten free vitamin D3 supplement of at least 2000 IU, a gluten free magnesium (stearate or glycinate form) and a gluten free zinc supplement. Many of your symptoms could be caused by vitamin and mineral deficiencies. B vitamins are water soluble so don't fear overdose.