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My Imagination? Coincidence?

momxyz

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momxyz Contributor
momxyz
Posted

If this is not the right forum, mods can move!

Ok I have posted elsewhere about my daughter who while not diagnosed as a celiac, had and still experiences symptoms of gluten intolerance: rumbly bowel, constipation, delayed puberty, trouble sleeping, and this summer, depression. She has been working to eliminate gluten from her diet for a little over three weeks now, and while this has not been a miracle cure, her mood has lightened and recently she has been sleeping better, more consistently. Jury is still out on the constipation issue, but its been a week since she's had to take a laxative.

Ok so while she has been eating gluten free, I have mostly been eating gluten free as well, simply because we both like lots of fruits and vegetables, and brown rice has been a staple in our house for quite some time anyways, and I am beginning to learn to bake gluten free. gotta test my own baking, after all! But I haven't tried to "convert" my husband, so there have been nights where my daughter has been out that we've had sandwiches for supper, or pizza (not gluten free).

Last Saturday night was a pizza nite. And I woke up Sunday, and the persistent rash that I have around one of my ankles is itching like crazy!

About this rash. I have had off and on bouts of athletes foot (sorry if TMI) and of course that's itchy and yes I do scratch. and so I have ended up with sore spots from my scratching that go away when I treat my feet with the antifungal stuff. Well a few months back I get another episode. Get some sores on both feet. Treat with antifungal. And while I get 90% relief there are a few sores on the top of the foot and lower ankle that are bothersome and not going away. There's quite a red zone around these sores, I wonder if they are super-infected with staph. So I apply topical antibiotic cream to them 3 times a day. This seems to help on one foot. On the other foot, there are more sores, so its taken more time and as they heal I have these light red spots that stay. By the end of last week the foot was looking pretty good, but when I woke up Sunday morning, the remaining sores were very red, probably because I had been itching thru the night. The itchiness was very pronounced!

A bell goes off in my head...I'm not saying... but I have read that intense itchiness is a hallmark of DH. I don't have dapsone in my house, but I do have cortizone 5 (both act as antinflammatories). After my shower, instead of the anitbiotic cream, I use the cortizone. And I decided... no more bread for me!

Well this is the third day. The redness is much decreased as is the itchiness. Now, I'm not saying this is DH, I would have to go to a dermatologist for that. I got enough co-pays for my daughter right now; I'm at the back of the bus! And I'm not even saying that 3days of gluten-free and cortizone made the difference. who knows. But if the sores are eliminated with what I am doing now, well that woud be pretty interesting.

Regardless of what happens there, I am going to pursue gluten-free for myself, because it will help me identify things in the household that aren't good for my daughter. she is good at the obvious things but reading the fine print is still a skill to be learned for her. For example, salad dressings were an area of concern and I scrutinized the additives on all of the ones we use. thankfully most seemed to be ok, but I did find that the brand of yogurt we've been buying is not gluten free. We only had one left and I pitched it.

Monday at work I had an interesting experience. I am starving at lunch time and really want something more than my usual salad. But I am going to do it gluten-free, right? We have a pretty good cafeteria so I think no problem. Was I wrong. Selections from the hot menu: lasagna, hamburgers with onion rings. Buggers. Soups: both were cream based soups (?thickening agents?) buggers x2. There's the sandwich line.... NOT. Sigh... Salad again, with vinegrette, and a banana cuz I'm so hungry!

This really underscored to me, if I'm gonna talk the talk with my daughter, it's really really worth it to also walk the walk.

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darlindeb25 Collaborator
darlindeb25
Posted

I think you are on the right track, and figured it out much quicker than most doctors. If you don't feel you need an "official" diagnosis, then go gluten free with her. You already know it is helping you.

momxyz Contributor
momxyz
Posted
  • Author

thanks for the vote of confidence.

I would not need the dx for me personally. I am content to be self diagnosed.

The only reason for me to pursue further is to lend credence to the idea that the root cause of my daughter's depression is related to gluten intolerance. I really don't want to see her going on antidepreessant medication, if dietary changes can address the cause.

We have a month and a half before she is scheduled to see a psychiatrist that would potentially prescribe thse meds.

I am hoping we can both realize substantive improvement thru dietary changes alone before then - then we might be able to gain some attention from ears that are of a conventional medical mindset....

ravenwoodglass Mentor
ravenwoodglass
Posted

First I am glad to hear that your DD is responding well to the diet. I hope it helps her depressive issues enough to be able to avoid the meds. If she is responding well do make that clear to the psychiatrist when you see them and it might be a good idea to bring in some peer reviewed articles on celiac and depression. If you do a search you should be able to find some good ones. I have severe anxiety and they kept trying to tell me I was depressed and prescribing meds to treat that made me worse. Once I brought in some articles for the doctor to read they finally listened and now I just take a med for anxiety.

Celiac is strongly genetic so it does not surprise me that you may have issues with gluten also. If you can see a derm when the rash is active they can biopsy beside the lesions to look for DH. If that is not something that you feel a need for then just remain on the diet.

ranger Enthusiast
ranger
Posted
thanks for the vote of confidence.

I would not need the dx for me personally. I am content to be self diagnosed.

The only reason for me to pursue further is to lend credence to the idea that the root cause of my daughter's depression is related to gluten intolerance. I really don't want to see her going on antidepreessant medication, if dietary changes can address the cause.

We have a month and a half before she is scheduled to see a psychiatrist that would potentially prescribe thse meds.

I am hoping we can both realize substantive improvement thru dietary changes alone before then - then we might be able to gain some attention from ears that are of a conventional medical mindset....

Read on this forum a topic on symbalta (sp). I was considering taking a med for another reason, but after reading about the difficult withdrawals, no way.

ravenwoodglass Mentor
ravenwoodglass
Posted
Read on this forum a topic on symbalta (sp). I was considering taking a med for another reason, but after reading about the difficult withdrawals, no way.

Really really good point, I hope you don't mind my correcting your spelling to make it easier for her to find, it is Cymbalta and here is a link to the conversation referred to

https://www.celiac.com/gluten-free/index.php?showtopic=60639

Just in case the link doesn't work it is on the current page under 'Gluten Intolerance and Behavior'

If you do allow them to put her on a psychotropic drug please do watch her carefully for adverse effects from a worsening of depression, suicidal ideation, psychotic thinking, cutting behaviors etc.

momxyz Contributor
momxyz
Posted
  • Author
Really really good point, I hope you don't mind my correcting your spelling to make it easier for her to find, it is Cymbalta and here is a link to the conversation referred to

https://www.celiac.com/gluten-free/index.php?showtopic=60639

Just in case the link doesn't work it is on the current page under 'Gluten Intolerance and Behavior'

If you do allow them to put her on a psychotropic drug please do watch her carefully for adverse effects from a worsening of depression, suicidal ideation, psychotic thinking, cutting behaviors etc.

Thanks to both of you for the info. I have read enough about these drugs to scare my pants off already.

The tricky thing in our process is that since she is 17 1/2, she will be seeing the psychologist by herself, although I did accompany her on the first visit and did mention the fact that we were trying a glute free diet. (This is not the person who would prescribe.) Her second visit is today.

She has been sleeping so much better already, I hope she reports this. Also, I've heard her in conversations on the phone with grandma and BF, mentioning how gluten stuff makes her feel; I hope she comments on this as well.

But although she is feeling somewhat better its a gradual process and I am afraid that "a quick fix" might appeal to her. But the psychologist can't prescribe so that won't happen today, and she is not scheduled to see the psychiatrist till the third week of September, unless they bump that up....

I am on pins and needles, and yes, watching like a hawk, but I appreciate the reminders!

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BettyinMD Newbie
BettyinMD
Posted
Thanks to both of you for the info. I have read enough about these drugs to scare my pants off already.

The tricky thing in our process is that since she is 17 1/2, she will be seeing the psychologist by herself, although I did accompany her on the first visit and did mention the fact that we were trying a glute free diet. (This is not the person who would prescribe.) Her second visit is today.

She has been sleeping so much better already, I hope she reports this. Also, I've heard her in conversations on the phone with grandma and BF, mentioning how gluten stuff makes her feel; I hope she comments on this as well.

But although she is feeling somewhat better its a gradual process and I am afraid that "a quick fix" might appeal to her. But the psychologist can't prescribe so that won't happen today, and she is not scheduled to see the psychiatrist till the third week of September, unless they bump that up....

I am on pins and needles, and yes, watching like a hawk, but I appreciate the reminders!

Best wishes for your daughter!!

momxyz Contributor
momxyz
Posted
  • Author
Best wishes for your daughter!!

thank you Betty so much!

I really do believe in the power of prayer or positive thoughts or good vibes or positive visualization... however and whatever fits your way of thinking.

so I appreciate your wishes, and welcome all and any "good thoughts" that anyone else on this board wants to send my daughter.

(I will reciprocate the favor if you identify your want/wish/need)

momxyz Contributor
momxyz
Posted
  • Author

another 10 days down the gluten free trail....

or almost gluten free. I did have a slip up in a social situation where I was starving and gluten free options were slim to none. On the other hand I had a good talk with my husband and he's on board with using the gluten free pizza crust for everybody (not just my daughter). We discovered the Namaste mix which was absolutely delicious. As was Tinkyada brown rice penne, which I have the opportunity to order through a food coop.

I still have a few bright red and very itchy spots...the hydrocortizone helps but I have to apply it 3 times a day. But now along with the red itchy places there are many more dull, tannish mottles where the other sores have healed. I am still getting a few new ones but I feel like I am gradually getting ahead...it is slow going. Maybe next summer I wont have to hide my feet!

My daughter has hardly been at home - working, shopping for school or with the BF. She too seems a bit better as time goes. Not a dramatic day to day change.... just... a lightening. And she's actually talking to me, not being the total crab she was a few weeks ago. The psychologist has done nothing to push up the appointment with the psychiatrist; I'm interpreting that to mean she may not feel the need for meds is immediate. So I'm just going one day at a time, hoping that each and every day takes us both in the right direction.

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