Wrinkled fingertips, swollen thumb, hair loss...weird stuff

[Stacy0w]

I've been Gluten-Free for a year. A year ago after freaking out I was excited to start feeling better. Well, I'm still waiting. I guess my stomach is better than it had been. My fingertip are still super wrinkly and no one knows why they are wrinkled to begin with. My right thumb swells less, but still randomly swells for a few days then goes back to normal, but leaving horizontal ridges in my nail.  My hair is falling out at my temples to the point it's pretty much nonexistent. Looks awful. And I'm still tired. I couldn't sleep last because of rumbling stomach. I had a little ice cream after lunch, but that's the only "weird" thing. I'm so frustrated. Iron levels were fine. Thyroid was normal. Still JUST healing?  Another autoimmune thing at play now?  I take a multivitamin and probiotic. Tried vit B supp, but my body didn't like them. Suggestions?

[icelandgirl]

1 hour ago, Stacy0w said:

I've been Gluten-Free for a year. A year ago after freaking out I was excited to start feeling better. Well, I'm still waiting. I guess my stomach is better than it had been. My fingertip are still super wrinkly and no one knows why they are wrinkled to begin with. My right thumb swells less, but still randomly swells for a few days then goes back to normal, but leaving horizontal ridges in my nail.  My hair is falling out at my temples to the point it's pretty much nonexistent. Looks awful. And I'm still tired. I couldn't sleep last because of rumbling stomach. I had a little ice cream after lunch, but that's the only "weird" thing. I'm so frustrated. Iron levels were fine. Thyroid was normal. Still JUST healing?  Another autoimmune thing at play now?  I take a multivitamin and probiotic. Tried vit B supp, but my body didn't like them. Suggestions?

Hi Stacy,

I'm sorry to hear about your ongoing problems.  The hair falling out at your temples sounds thyroid related to me.  You said thyroid results were normal.  Do you know which tests you had done?   A lot of Dr's will only test TSH and that doesn't give a full picture of your thyroid health.  Have you been tested for Hashimotos?  Here is a full list of thyroid tests to ask for if you want to check into it: TSH, free T3, Free T4, TPOAb and TgAb.   The last 2 are antibody tests.  Here is a list of hypothyroid symptoms if you have time to read:

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Good luck...I hope you get some answers!

[cyclinglady]

Have you had follow-up celiac disease testing to make sure you are diet compliant?  You may think you are gluten-free, but you might be getting glutened.  There was the study in Boston where they tested probiotics and found that almost  75% of them contained gluten (Google to check that percentage, but it was very high!).   I only take gluten-free certified supplements as I am not willing to take any risks.  Personally, the stakes are too high!  

Try lactose free ice cream.  You make have lactose intolerance.  Cheese and yogurt contain far less lactose.

Getting your thyroid checked is a good idea too.  

Finaly, I felt best at two years.  Good at a year but not all my symptoms resolved at the one year mark.

 

[manasota]

I've been gluten free nearly 6 years.  Lots of stuff is better; but still not well.

I can definitely say that eating whole eggs did make my hair and nails much stronger, fuller, etc.  As in 2-3 whole eggs/day. (Certain I'm not absorbing it all.)   Certified gluten free supplements didn't do it.  Whole eggs did.  Maybe you could try an egg a day?

I don't know about the wrinkling; but it does seem that people have widely varying symptoms with Celiac.

My best advice is to try to be patient with your body--and to LOVE your body!  It's the best gift you'll ever receive.  ;-)

[gilligan]

I don't have much to add to help you, but I can tell you that it took me almost two yrs. to heal, and I was only starting to feel bad about six months prior.  My hair thinned, also.  I started taking biotin, and even though I still take it, I'm not sure it really helped or enough time went by that it just started improving.  My sister was diagnosed about the same time as me, and her very thick hair was falling out, also.  Two and a half years later, it's as thick as ever.  My hair has improved, but not as thick as it used to be. Neither one of us take any supplements other than calcium, iron, D3.

[Stacy0w]

Thanks, everyone!  I have not been retested for celiac. I guess that is something I should do. The thyroid tests the ran were TSH, T3 and T4.  My mom has hashimotos, fibro, chronic fatigue, raynauds. I have raynauds. Her sister has MS. Autoimmune party in my family line.  Is there a specific hashimotos test to ask about?  Based on symptoms I figure I've had celiac for most of my life if not all and I was diagnosed before my 39 birthday. I'm sure a lot of damage has been done. Some days it's harder than others to be patient with my body. 

[Momma2PirateNPrincess]

Have you had all your vitamin levels checked? That could be causing hair loss and ridges in your nails. 

[Stacy0w]

The only thing my insurance would cover was vit D and it was low. Can't afford to do more right now if not covered. My thumb with swell and hurt for a few days and a few weeks later I notice the ridges so I think it's due to the swelling. Shrug