wystearya
-
Posts
24 -
Joined
-
Last visited
wystearya's Achievements
-
-
My diabetic study is always marked "excellent" so no issues there. This last blood work was with fasting.
Thank you so much for the information. I do eat an apple nearly every day, but other than that I don't eat a lot of fruits. But I do believe I need to cut out most (if not all) prepackaged foods. I have been taking frozen (gluten-free) meals to work for my lunch nearly every day. They are fairly high in carbs and have a lot of corn. I suppose I need to start cooking and taking leftovers for lunches.
I also eat a lot of Greek yogurt. It's probably not really that great for me either. Added sugars.
-
I don't yet have all my test results back, but I do have some.
I was "negative" on the celiac panel (I plan to ask for copies of my actual numbers.)
"Low" on Vitamin D - Apparently the doctor wants to put me on 50,000 'unit' Vitamin D pills. To be taken once per week.
The thing that really bothers me is my cholesterol results. I had slightly high before and was able to lower it with cutting back on carbs. But this time it is worse than ever. :/
LDL = 150 HDL = 52 Cholesterol = 235
This is very upsetting. I know I haven't been watching my carbs as closely, but still, this is very bad. I need to be at a total of less than 200. All the sheet says is to "decrease fat, increase fiber." Not helpful at all...
Anyone else have high cholesterol issues? It runs in my family, my father had to have triple bypass some years back and is still on statins for cholesterol. Statins are awful! I do NOT want to end up on them!
I'm going to get back into really watching my carbs. That did help me once before with my cholesterol levels. I have read that LDL can be released if there is damage in the body. Is this true? Maybe I need to heal my intestines? I'm just worried and feel a little lost. :/
Thanks for reading.
----------------
PS - My Thyroid is apparently 'normal'. TSH = 2.418
-
Thank you both!
I'm hopeful my doctor won't push me to do the gluten challenge test. She has been reasonable and generally knowledgeable. Though the lack of testing when she initially suggested I go gluten free bugs me...
Anyway, I will keep this updated!
-----
I actually kind of hope they do find damage if I get the endoscopy. I don't want to drink the barium for nothing.
That and I would like some confirmation of my own strong suspicions. -
Yes, I just don't want to risk getting sick for a test!
I am going to see what the doctor thinks, but I am hoping to get the genetic test as well as thyroid functions. I'll be sure to mention nutrients too!
Thank you!
-
I'm going to give a little background information here in hopes that I can make the most out of my upcoming Doctor appointment.
About a year ago I went to see my doctor thinking I may have IBS. After speaking with her she told me to try a gluten free diet. No tests were done.
After another week of being stubborn, I finally tried cutting out the obvious sources of gluten. I felt much better! Still, no tests were done. It was assumed I was not celiac, "just gluten sensitive".
Fast forward to today:
I've been reading more and found out that I used to get DH. I had a bad gluten reaction two weeks ago. And I feel like I am reacting to even trace amounts now. I still get diarrhea more often than is normal.
-------------
I have an appointment this Monday morning.
Are there any tests I should request?
Would they be accurate with me avoiding most (if not all) gluten?
I am afraid to eat gluten on purpose anymore. I really don't want to do the test that requires eating it for weeks. I can't be sick that long. Though I can't say I have been 100% gluten free. I have avoided the obvious sources, but not eliminated cross contamination or trace amounts as ingredients in prepackaged foods, sauces, spices, etc.
I guess I might not be celiac, but I know I feel a lot better when I avoid gluten! It cured my bowel symptoms quickly when I first started. But now it just seems like I am getting ill often. I think it is from CC and small amounts of gluten in prepackaged foods. I guess the only way to know is to see my doctor, which is why I have made the appointment.
----
Thanks for reading!
-
About a year ago I went to the doctor thinking I might have IBS, and she recommended I try a gluten free diet. No tests were done at the time. I felt better and thought I was "just gluten sensitive" and would be OK.
Fast forward to now:
I have learned that I used to get DH. I had a bad reaction to eating gluten two weeks ago. The more I read and learn the more I believe I am Celiac.
--------
I actually did make an appointment to see my Doctor this Monday. I will be telling her all this and see if there is any testing I should get done.
-
Every label, every time. I like this, and will remember!
My Mother is another issue. I'm 33 and know she can't legally tell me what to do or control me. She is just so controlling in nature and stubborn and easily angered that it makes it hard for me to talk to her about anything, especially something important. It's sad, but I am much closer to my Dad than my Mom. She also treats my Dad like a child at times, and I don't know why or how he puts up with it! Not to say he lets her run everything, but keeping the peace with her means letting her have her way...a lot. So, that is why I am concerned about talking to her, especially without 'official' proof from a doctor.
-
I have seen wheat as an ingredient in canned beans. As always, read labels.
Colleen
This is probably it then.
While I didn't cook it, and thus didn't read the labels, I know it's my fault for eating it without -knowing- it was gluten-free.
I'm going to have to have a sit down with my parents, and probably go back to the doctor for some testing. My Mom probably won't believe me unless I go to the doctor. She is terribly stubborn.
---
Thank you all for the replies!
-
This morning I woke up with another of my migraines. Thankfully I am not in too much pain, but enough to bother me. I am also frustrated because I don't know why this happened, and I think I must have eaten something.
I seem to have a delayed reaction from when I eat gluten and when I show symptoms. The last time I noticed it, it was several days before the full effect was on me. This was only a couple of weeks ago.
Can symptoms come and go after being glutened? If so how long can they linger?
I am also concerned because I ate some chili my Mom had fixed the other day. I know they use several canned items in the chili, so I am worried maybe this is my problem. I'm going to have to not eat her cooking for a while... This should be 'fun' to explain to her.
I fixed a meal last night and realized one item I used had citric acid in it. From what I have been reading, this can come from wheat, correct? - I always thought this was from citrus fruit! I'm not sure this is my problem, since I have eaten this same thing before and not had a problem. But I am concerned.
I'm just frustrated that I don't know why I am hurting. I'm upset with myself too. I'm still new to eliminating ALL sources of hidden gluten. I am trying and making progress, but it makes me upset when I mess up.
Thanks for any help and listening to me,
~Wystearya
-
Probably already been suggested, but you could offer to bring in a dish (or two). Then you could make it gluten free and at least have something there you know you can eat.
This year I am going to let Mom make the regular stuffing for her and Dad. I will make my own small pan using some toasted gluten-free bread. I am hoping this will be better than the prepackaged mix I had before. My Mom is also willing to use corn starch instead of flour for the gravy and I will be helping to cook. I'm thankful she is willing to work with me.
I'm sure if you just explain that bread can literally make you sick that your family will understand. At least they should!
-
I live close, but I don't think they fully understand what I have gone through. Maybe that is my fault, I didn't want them to worry about me and likely downplayed how sick I was. I will try to clear that up and tell them.
I don't want to push them too hard, I just hope they listen.
Thank you for the reply!
-
I've known I am "gluten sensitive" for about a year now, but only recently realized I am likely full blown celiac and need to be much more careful about my diet. I had a big wake up moment when I ate some rolls (knowingly) made with regular flour. I was so very sick. I don't ever want to do that to myself again! I also discovered that a skin condition I used to get frequently was/is DH. I had always wondered what the odd bumps on my hands were, now I know..
Knowing all this I am more concerned about my parents, especially my Dad.
My Dad's mom died of colon cancer when I was still a baby. I never got to meet her. My Dad has had hemmoroids removed and several colon polyps removed. I've finally got him to at least limit his breads, I think he realizes it makes him feel better. But, I am going to talk to him again once I get a chance. I want him to be tested, I don't want to lose him over gluten!
My Mother is also of concern. She had a miscarriage before I was born, I am an only child. She has terrible mood problems. She also has the beginnings of arthritis and osteoporosis. And she might have carpel tunnel, she says sometimes her hand just "lets go" of things.
She is only 61. I think she is too young to have these problems. I worry she may need to be tested as well. ... Thing is, I cannot talk to her about hardly anything. She gets so angry and defensive. When I first told her and my Dad about the gluten and encouraged them to see about it, she dismissed my concerns right away. :/
I am thankful my Dad at least listens to me. I will be talking to him soon. I will -try- to talk to my Mother, but she really is stubborn. Even if I print out pages of things for her to read, I know she will not fully listen. I have tried to help her with even small things, and she is so stubborn she just won't change.
Do you all have any ideas for me? I want to help my parents. I worry about my Dad because of how his mother died of the colon cancer and his own polyps. I just need them to realize how serious it is!
Thanks for reading,
~Wystearya aka Christina
-
even the stickies on envelopes
Wow.. I did not know this. I wonder if Post it Notes are gluten free? I use them all the time at work.
---
My hair also thinned significantly right before I found out I was gluten sensitive. I also just found out I -have- to be more careful with my own eating habits too.
I know your scalp is itchy and sore, so you probably won't want to try this until it is healed.. But I have been using an apple cider vinegar rinse for a few months and I believe I am seeing more hair coming back! I tend to have an oily scalp, and I think the rinse (1 third vinegar, 2 thirds water) is helping! I typically use my shampoo, rinse with water, and then I use my vinegar rinse. I work it into my scalp, especially the top and front. Keeping my head tilted back to avoid getting it in my eyes. I then rinse out the vinegar and use some conditioner. The vinegar does not feel like it strips the hair. It actually feels smooth/silky. This may or may not help you, but it does seem to be helping me.
I hope your diet & lifestyle changes will help your hair come back!
-
The first link (stresses) seems to be what triggered mine. I had migraines sometimes, but no other major/noticed symptoms. Then after a very stressful time at my job I was very sick. Digestive problems, etc. So I fully believe that stress can trigger it, or at least aggravate it.
I was 32 before I found out I had this! So, you are not alone!
-
Nice, and your right it's not a lie!
-
Yikes. I definitely don't want to risk getting DH again. I know it used to bug me so much when it would flare. The little bumps got so sore once they burst!
I'll probably skip the tests then, as I really don't relish the thought of making myself ill anyway. I really was very sick this last time. I don't want to do it again.
It has made me realize that 'just a little bit' is not OK for my body anymore. Thankfully I do have some grocery and specialty stores here that carry gluten free items. I also have discovered the joy of cooking. When I have time, I do love to cook! I enjoy watching the cooking shows on TV for tips and ideas. I've been doing good at gluten-free cooking. It's just hard during the week since I work full time.
I do have to say I now wish my doctor had gone ahead and tested me. She suspected gluten was my problem, so I don't know why she didn't test me at the time. :/ I'm still thankful that I eventually heeded her advice and went off gluten. It amazed me how quickly my digestive issues cleared up! And I do feel better overall when I avoid gluten. It's just a shame that without the official diagnosis some people will never fully accept my disease.
I appreciate your help so much! I am going to focus on getting myself 100% off gluten now. Even the trace amounts. *ugh* I know this won't be easy, but my health is worth it. I just have to remember how sick I was and how much better I can feel.
~Wystearya
-
Thank you again!
I looked up some pictures of DH on hands (as this is where I used to get it) and found this image:
This looks just like it! I have not had this happen in a very long time. But I will say my cheeks are quite red a lot of the time. Not itchy and no little bumps, just red.
Since I haven't had any DH in a long time, I think blood tests and biopsy is my best bet. I'll talk to my doctor about it. She is the one who recommended a gluten free diet to me. At that time I thought I might have Irratable Bowel Syndrome as I was constantly sick. Turns out some stress I was having at work seemed to cause my gluten issues to escalate!
I don't want to have to get sick (eat gluten) just to take a test that might come back negative (even if I am celiac), then again a firm diagnosis would be good to have.
-
The bumps I get (used to be every summer, now just rarely) are tiny and clear. The first time I got them they did itch like crazy. Once they break the surface the skin there gets dry.
Is this DH? What is DH?
I was not tested for celiac, it was assumed I didn't have it. I guess people with celiac react more and are more sensitive to the gluten and cross contamination? I know when I finally went to the doctor I was very ill. Digestive issues were every day. It was awful. I can say that since limiting gluten I also don't get migraines like I used to either. More energy too.
I might request to be tested, even though I have been limiting gluten for a long time. I am fairly certain my digestive tract was in bad shape. It took me a long time before I could eat spicy foods again and not be ill.
Thank you so much for the replies! I just recently have tried some gluten free bread. I was reluctant to pay $5 per loaf, but it is worth it not to be sick! I'll just go without for a while, though if I need a fix it is good to know a trusted brand. Do they sell online? I'm not sure I have any stores near me that carry Against the Grain, but I will check!
~Wystearya
-
I had some corn on the cob a few months ago and don't remember having any negative affects.
Maybe I'll just have to test myself and see if there are corn products and I can and some I cannot.
-
I've not been very active here in a while, and I am still a little new to handling my gluten sensitivity. A few weeks ago I 'poisoned' myself with gluten. Badly. (I ate some homemade rolls my Dad offered me... stupid I know!) I'm actually now turned off eating it, which is a good thing for me!
Anyway, on to my current question.
I know that in some people corn is also an issue. I'm wondering if I might also have this. I've had raccoon eyes as long as I can remember, but apparently this can be a symptom of corn allergies. I've also noticed sometimes in the past getting tiny fluid filled bumps on my fingers, and I think this is also something to do with corn..?
I'm just concerned since several gluten free items still contain corn. I love corn chips and salsa.. But if I have a problem with it I don't want to make myself sick anymore.
Is there a way I can test this? I guess the only way is to eat some corn and see how I feel?? *ugh*
I do eat corn, but I am not sure if I react to it. This is because I wasn't being as careful at avoiding gluten as I should be. My recent glutening was a wake up call for me. I cannot let myself eat any, especially on purpose! I'm not celiac, and I thought 'a little won't hurt' but it does. And I am now being much more careful.
Can anyone here tell me how common it is for those who are gluten sensitive to also react to corn?
Should I try a bit and see how I feel? Or..?
Thank you very much!
~Wystearya
-
Thank you all!
I'll have to get the probiotics and enzymes. And I'll be sure to keep things simple now.
GFinDC - No wonder it can hurt so bad..! 22 feet is a lot of pain!
-
I've only just recently (past month) been trying to go gluten free. It does seem to be helping me, especially the digestive issues I was having.
But...
This morning has been bad. The big D, clay colored, and cramping. I am 99% sure I didn't eat any gluten at all yesterday! I am wondering if maybe something I had was too spicy for my healing system. I made a roast in the slow cooker and when it was finished I did add a good bit of steak sauce to my bowl of it. The steak sauce has no gluten or wheat. It does however contain Monosodium Glutamate. Before I never had a reaction to MSG. But I know that sometimes too much spice would make my system irritated. Could this be it? Maybe I just need to eat really bland for a while.
I am 32 and likely have been gluten sensitive all my life. Only recently having the digestive problems, brought on by stress at work. So, I guess I need to just realize I probably have a lot of damage to heal. Take it easy on myself.. I sure will miss spices though!
Anyone have any suggestions for me? I know I need to get something for my digestive track. But not sure exactly what.
Thank you all for your patience with me!
I need to visit my parents, as they have a working printer and I can use it to print out all the tips I have received!
-
Thank you for the tips and all the links!
Unfortunately it is too late for me to get the test. I am going gluten-free already. The Doctor just suggested it and didn't mention a test. :/ But, I will be seeing her again on the 24th and I will see what she says. Though, I am not willing to become ill again just for a test.
I'm definitely cooking more! Plan to dig out the old crock pot and use it! If I can make enough for leftovers it will help. I got used to just cooking for myself, so leftovers were not common here. I'll get there though. I am just thankful it doesn't seem to be anything I can't handle. Not easy, no. But I am trying to not allow it to get me down and just focus on healing and feeling better!
-
Without testing, there is no way your doctor could determine whether you are celiac or gluten intolerant. It is a pity she didn't test you for celiac before suggesting you try the gluten free diet. Depending on how long you have not been eating gluten, it is probably too late to get a definitive answer.
...
The genetic test, as you may know, does not tell you if you have celiac; it can only tell you whether or not you are predisposed to develop it. If your parents have the same predisposing genes as you, it could point to celiac. The better test for your parents would be to have the celiac testing done since you inherited the gene(s) from one or the other (or both).
Stay gluten free and stay well, and post as long and often as you like - there is always someone here who will read and try to help with any questions. Also, read as much as you can about how to keep gluten out of your life.
Oh, it is a shame about the testing. As I will not be willing to eat gluten again willingly and make myself sick just for a test.
But maybe I can suggest my parents get tested since they are still eating 'normally'.
Thank you so much for the kind reply! I know that this isn't going to be easy and I know it will take time for my body to heal. I just have high hopes, since so much of what I read relates to me perfectly!
Today I am lethargic, but still feeling better on the inside. I'm trying to stay positive.
Low Vitamin D & High Cholesterol...advice?
in Post Diagnosis, Recovery & Treatment of Celiac Disease
Posted
Thank you! I will make sure to get D3, a friend of mine also suggested this!