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woodyzee
Joined: 03 Sep 2006
Posts: 87
Location: Northern Illinois
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 Posted: Wed Nov 12, 2008 4:13 pm Post subject: Newly diagnosed and still having symptoms |
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I work with someone who's college age daughter was diagnosed with celiac in August. They have done an enormous amount of research (as we do) and are extremely careful.
Her daughter felt better for 2-3 weeks but now is back to having some of the same symptoms. The symptoms she most complains about are:
dizziness
fatigue
very chapped lips (anyone else have the chronic chapped lips????)
They cook meals for her and send them frozen. She is a pretty basic eater (kind of picky) so it is a fairly basic dite. They have double checked all of her foods. She is rarely eating out and getting nothing from the dining hall. They have checked out her lip gloss, toothpaste....
It has now been 3 months. What is your input? Any suggestion would be appreciated, no matter how basic.
I am posting for her. She is nervous to post, but hopefully will get over that. |
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celiacmaine-iac
Joined: 19 Dec 2007
Posts: 1352
Location: Maine
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| Posted: Wed Nov 12, 2008 6:06 pm Post subject: |
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Could it be CC issues with a room mate? Anyone touching her foods, i.e. putting hands in, say, a bag of chips?
Has she had any recent blood work? The fatigue has me wondering if anemia could be an issue? If she had anemia pre-dx, maybe it hasn't had enough time to resolve. Just a stab in the dark. She should probably run it by her doc, since as we say often here, we are not doctors.
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Steph |
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forinajoy
Joined: 01 Aug 2006
Posts: 277
Location: Texas
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| Posted: Wed Nov 12, 2008 10:56 pm Post subject: |
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could she be smooching someone that is NGF?
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Connie, mom to Ina, 14 y/o with CD |
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ostrich
Joined: 30 Mar 2006
Posts: 4960
Location: Nebraska
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| Posted: Thu Nov 13, 2008 7:54 am Post subject: |
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I second what Steph said. She probably needs to go to her doctor, maybe get some blood drawn. Are you sure she's eating everything and drinking OK? I'm not a doctor, but those symptoms sound like anemia or dehydration.
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Ostrich :>--O==={
Time falls away, but these small hours
These little wonders still remain |
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woodyzee
Joined: 03 Sep 2006
Posts: 87
Location: Northern Illinois
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| Posted: Thu Nov 13, 2008 9:57 am Post subject: Doctor |
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I certainly did recommend seeing the doctor again. She is not scheduled for follow up until May but I would think that they could test the blood levels again now for improvement.
In the meantime, we are just trying to exhaust all possibilities and narrow it down. You all know how that is  |
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celiacmaine-iac
Joined: 19 Dec 2007
Posts: 1352
Location: Maine
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| Posted: Thu Nov 13, 2008 10:38 am Post subject: |
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Is there a health clinic on her campus? They might be able to run a few tests to get an idea of what might be going on, and at least evaluate her to see if she needs to see her regular doc. They probably would also be looking to see if she might have something that is relatively common to her age group such as mononucleosis, etc. It's natural to blame everything on gluten, but it could very well be something else.
Hope she gets this figured out. It's no fun feeling sick.
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Steph |
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woodyzee
Joined: 03 Sep 2006
Posts: 87
Location: Northern Illinois
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| Posted: Thu Nov 13, 2008 11:13 am Post subject: Reply from mom |
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Here is a message from the mom of the college student:
| Quote: | They have good comments! Good thinkers. i discussed the anemia issue with the doc and ____ was slightly anemic. like 1 point under. doc said since it was so close that the iron might cause more problems than what it was worth.......we're going to retest. and dehydration on the lips is something we thought of...poor girl drinks water by the gallon thinking it might help.
can't wait to see more! Thanks so much!
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cruelshoes
Joined: 23 Sep 2005
Posts: 3380
Location: Washington State
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| Posted: Thu Nov 13, 2008 3:12 pm Post subject: |
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It is not uncommon to feel better for a while and then feel worse again. it's all part of the detox process and the body getting used to a new way of eating.
If she is a college student, she is probably on the run quite a bit. Is it possible that she is not eating enough and having blood sugar crashes? That can cause dizziness and fatigue. What kind of measures is she taking for herself when she is going to be away from home for a while? Is she packing snacks? It may be wise for her to eat quite a few small meals per day rather than 3 bigger ones.
Hope she feel better soon. I hope she gets over her nervousness enough to post on the forum. We really don't bite...hard. 
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-Colleen
Where are we going, and what am I doing in this handcart? |
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jeant
Joined: 06 Apr 2008
Posts: 273
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| Posted: Thu Nov 13, 2008 5:44 pm Post subject: Re: Reply from mom |
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| woodyzee wrote: | Here is a message from the mom of the college student:
| Quote: | They have good comments! Good thinkers. i discussed the anemia issue with the doc and ____ was slightly anemic. like 1 point under. doc said since it was so close that the iron might cause more problems than what it was worth.......we're going to retest. and dehydration on the lips is something we thought of...poor girl drinks water by the gallon thinking it might help.
can't wait to see more! Thanks so much!
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Any iron deficiency can cause her symptoms, and anemia is the final stage of iron deficiency. If her hemoglobin was 1 point below anemic, I would not brush that off. I had normal hemoglobin tests (usually 2 points above anemic) but when I had a ferritin test (which checks how much iron the body has stored), that was low. My doctor put me on iron supplements (pre-GF) even though I wasn't technically anemic.
Lots of people can have hemoglobin tests that fall in the normal range but still have their symptoms caused by low iron. Since her doctor doesn't want her on supplements, she could try eating more iron-rich foods to see if that helps. And if she's already eating lots of iron-rich foods, she could see if she could do more to help with iron absorption.
(I'm not in the medical profession or anything, I just battled fatigue and other symptoms for years before any doctor took me seriously.) |
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cultureslayer
Joined: 07 Apr 2006
Posts: 921
Location: NC
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| Posted: Fri Nov 14, 2008 12:09 pm Post subject: |
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Definitely check out other things. Took my docs 2 1/2 years to figure out I had Lyme.  ELISA didn't detect it, had to send off for specialty testing and lately I've been feeling worse so I guess it's time to try some new antibiotics. 
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Lauren
Pain is inevitable; suffering is optional. |
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KateEIU11
Joined: 13 Nov 2008
Posts: 9
Location: Northern IL
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| Posted: Fri Nov 14, 2008 9:38 pm Post subject: |
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Hello! I'm Kate, the "subject" of this discussion! I finally figured out how to register on here and I am so excited! Everyone is so helpful and has no much information to share! This is EXACTLY what I needed! I feel alone about CD at school because I dont know anyone else who has it but when I come on here it's such a relief!
I called my doctor today about my chapped lips and questions about my results on my previous blood work about being anemic. I have an appointment scheduled for my Thanksgiving break where I will be home from school. He wants to do some more blood work. As I did more research on the chapped lips it seems to be related to anemia. After reading all of these posts, I havent read that chapped lips and CD cross paths!
Now I have a few questions that have been eating at me so hopefully you can help me out! 
Whenever I come home from school, I enter our kitchen and instantly become freaked out about the CC. Although my family is very good about keeping it GF when I am home, I still fret! What about her pots and pans? They have the ridges in them but does that matter? It seems silly for her to replace them just for me (I am the only GF member in the household). Also, the silverware....I read that the gluten infested silverware should not be washed in a dishwasher with GF silverware. How am I possibly supposed to keep "my" utensils seperate from the rest? Is this extreme or a freakishly scarey fact?
As my paranoia takes over my life, I begin to wonder about things that may be rediculous. Today my roommate (whom is very supportive of the GF lifestyle) was eating a panini and channel surfing with the TV remote control. When I took control shortly after, I wiped it down with a clorox whipe. Is that really necessary?
I read that nail polish may contain gluten! AHH! Apparently the brand OPI contains gluten in the top coat and base coat products but the nail polish itself seems to be ok. Have you heard anything about this? I love getting my nails done and even painting them myself! I hope this isnt something I have to give up! 
I am a frequent scrapbooker and my hands are always covered in glue, inks, paint, and other adhesives. However, I havent found the ingredients listed on any of the bottles! Since the glue in envelopes is not ok (which I just found out!  ) wouldnt the products I just listed be bad too?
I have also read that I need to convert to GF shampoo and other hair products. I have been using "Squigle" toothpaste (supposidly allergy free) beacuse I thought that would be my solution to the chapped lips. It does not contain gluten but it would be nice to use a "normal" toothpaste. Are the "normal" toothpastes ok? Do I really need to switch body wash, hair products and such?
I know that was long and I did my best to cut it short! In the future I hopefully won't have so many thoughts on my mind since I finally have such a great place to express them 
I have been doing so much research and putting all of my spare time into it! I GREATLY APPRECIATE everything you guys have to offer!
Thanks a ton!
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~ Kate |
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aklap
Joined: 02 Oct 2004
Posts: 10602
Location: WI, USA
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| Posted: Fri Nov 14, 2008 10:12 pm Post subject: |
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Hey Kate! Welcome to the board. Glad you decided to join the fun.
I'm trying to put the finishing touches on tomorrow's info for our support group meeting - but I just wanted say Hi and Welcome.
FYI: Weekends are kinda slow around here - so be disappointed if you don't get too many responses in the next day or two 
Hang there. Things will get easier, just keep reading and learning as much as you possibly can. Make yourself at home. There's GF pizza in toaster oven. The GF Party mix will be ready shortly... 
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Al
“We cannot all do great things, but we can do small things with great love.” Mother Teresa |
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Irish Daveyboy
Joined: 25 Aug 2008
Posts: 71
Location: Dublin Ireland
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cruelshoes
Joined: 23 Sep 2005
Posts: 3380
Location: Washington State
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| Posted: Mon Nov 17, 2008 12:07 am Post subject: |
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Forgive typos - my 2 year old is "helping" me with this message.
| KateEIU11 wrote: | | What about her pots and pans? They have the ridges in them but does that matter? It seems silly for her to replace them just for me (I am the only GF member in the household). Also, the silverware....I read that the gluten infested silverware should not be washed in a dishwasher with GF silverware. How am I possibly supposed to keep "my" utensils seperate from the rest? Is this extreme or a freakishly scarey fact? |
I got all new pots and pans, a new toaster, new wooden spoons and spatulas and new cutting boards. None of it was expensive. Think about crumbs and food residues. If kitchen item X can't be scrubbed very well after using it for gluten food, you really should consider having your own. You can do alot with parchment paper and foil to put a barrier between you and baking sheets and pans. Some people use a certain color spatulas for GF food (red means stop ) I personally did not replace metal silverware because it can be scrubbed and sterilized.
| KateEIU11 wrote: | | As my paranoia takes over my life, I begin to wonder about things that may be rediculous. Today my roommate (whom is very supportive of the GF lifestyle) was eating a panini and channel surfing with the TV remote control. When I took control shortly after, I wiped it down with a clorox whipe. Is that really necessary? |
Your wiping the remote seems reasonable to me. As someone who has gotten sick from very small amounts of cross contamination, I can attest that you can't be too careful. Don't let it rule your life or make you crazy, but do take common sense actions like you did with the remote.
| KateEIU11 wrote: | | I read that nail polish may contain gluten! AHH! Apparently the brand OPI contains gluten in the top coat and base coat products but the nail polish itself seems to be ok. Have you heard anything about this? I love getting my nails done and even painting them myself! I hope this isnt something I have to give up! |
According to the Clan Thompson website, OPI products are gluten free. I have not read about nail polish with gluten. Have you seen the safe lists on Delphi? There are some toiletries and personal care products on there.
| KateEIU11 wrote: | | I am a frequent scrapbooker and my hands are always covered in glue, inks, paint, and other adhesives. However, I havent found the ingredients listed on any of the bottles! Since the glue in envelopes is not ok (which I just found out! ) wouldnt the products I just listed be bad too? |
Envelope glue is GF(http://forums.glutenfree.com/topic1390.html) If it were me, I would be sure to wash my hands after touching all ths other adhesives unless you could verify gluten content. The gluten molecule is too large to be absorbed through the skin (some people disagree with this), but if you could get any of it in your mouth, it would be something to be concerned about.
| KateEIU11 wrote: | | I have also read that I need to convert to GF shampoo and other hair products. I have been using "Squigle" toothpaste (supposidly allergy free) beacuse I thought that would be my solution to the chapped lips. It does not contain gluten but it would be nice to use a "normal" toothpaste. Are the "normal" toothpastes ok? Do I really need to switch body wash, hair products and such? |
We use Crest toothpaste because I have verified that it is GF. Some toothpastes do contain gluten (at least one of the Sensodyle products does). You can verify with the manufacturers, or search for the brand name on this forum. I have eliminated all gluten containing toiletry products from our house. There may be a chance that lotion or shampoo can get into your mouth. Most celiac experts say that the gluten molecule is too big to pass the skin barrier (see glue discussion above), but many peole fell that they react. I think it is probably better not to take the chance.
Hope this helps. You are not alone. We have all been in the deer in the headlights stage, so don't be shy about asking questions.
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-Colleen
Where are we going, and what am I doing in this handcart? |
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cultureslayer
Joined: 07 Apr 2006
Posts: 921
Location: NC
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| Posted: Mon Nov 17, 2008 4:16 pm Post subject: |
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Good to know about Crest, I think I have about 20 tubes of prohealth.
I sent a request to Pert about the gluten status of their shampoo, I'll post back when I get a reply.
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Lauren
Pain is inevitable; suffering is optional. |
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