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

My Imagination? Coincidence?


momxyz

Recommended Posts

momxyz Contributor

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.


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



Celiac.com Sponsor (A8-M):



darlindeb25 Collaborator

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

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

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
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
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
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!


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



Celiac.com Sponsor (A8-M):



BettyinMD Newbie
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
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

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.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,191
    • Most Online (within 30 mins)
      7,748

    teresa1955
    Newest Member
    teresa1955
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...