Hello, I'm Carol And My Test Came Back +

[Carolita]

Hello all.

My name is Carol. I've been reading you for about an hour. About an hour and a half ago my doctor's nurse called me to let me know that my ANA test came back negative (second time in a row after it being positive for a while) but that the celiac test came back positive. This was the first time a had a Celiac test (blood test) done that I know of. She scheduled me an appointment for next week with the Dr. b/c she wants to talk to me about the results being positive. The truth is that I'm very scared and afraid somthing else might be wrong (kidneys, etc.).

Let me tell you a little bit about my background. About two years ago I started to feel very sick (dizzie, tired and with a rash on arms, legs, back and face) but I had always had stomach problems as long as I can remember (I even had a colonoscopy done as a baby b/c I had blood in my stool - ended up being amebas or at least that is what my parents were told). I've always had pretty bad periods and for a long time my stomach used to get pretty bloaded on the weekends. I even had a period of time in which I used to have a lot of diarrhea every day. I've seen several gastroenterologist and I even had an endoscopy done not too long ago but they always told me I was doing well and that the problem was IBS related. When I started to develop the rash and edema (edema around my eyes) about 2 years ago I even had to go to the ER b/c I woke up one day with my face looking like if had Chicken Pox and I couldn't see my eyes. At the ER they told me it was probably and allergy. I have to mention that the day before I started to develop the rash and edema, that I had eaten A LOT of chocolate cake. And I mean A LOT. I went to see an allergist but my test came back pretty negative to allergies except to a couple of pollens. My ANA on the other hand came back positive. She immediately sent me to the Rheumatologist and told me it was probably Lupus. I setup appointments with two Rheumatologist since Lupus is no laughing matter and I wanted multiple opinions. Both did several tests and told me they didn't know why my ANA was positive and that I didn't have Lupus. I continued to get sick so my husband started doing intense research on the internet to see if he could find anything that could help us. He came across Candida Albican. Where I live there is an immunologist that has done a lot of research on this so we setup an appointment with him. He did several allergy tests and concluded that I was allergic to yeast and mold. He put me on a low carbs, yeast free diet and prescribed Nystatin to kill the yeast in my intestines. I have been following the diet and treatment for about a year and a half now and I have also been receiving allergy shots from him twice a week. When I first went to see him he checked my ANA and it came back positive. After a year of treatment he checked it again and it came back negative. Last week I went to see an internist because I'm planning to go back to school and wanted to make sure all was fine with me. She tested my ANA again and tested for Celiac after I told her about my diet and how I have been feeling much better though not completely well just much better. Today the nurse called me with the positive Celiac results.

I'm scared of comes next. I have so many big plans to go back to school and study medicine but this last couple of days I have been feeling sick again. No rash, just very tired probably due to me consuming gluten. Also very dizzie at times and hypoglycemic. I forgot to mention that I have also been told I'm Hypoglycemic (low blood sugar).

Anyway, I wanted to introduce myself since I will probably be staying around here for a while. Any advice is appreciated. I'm very scared at the moment.

Thanks,

Carol

[dlp252]

Hi Carol, welcome! I don't know if I have any specific advice for you, but please try not to be scared. You are already on the right path by consuming a lower carb diet, but you do need to be careful of anything that contains gluten (that includes wheat, barley, rye and oats and any derivative of them, and spelt, kamut, and triticale). Be careful of malt too...that is almost always made from barley.

It can be very overwhelming at first, but it does get better eventually.

[Carolita]

Hi Carol, welcome! I don't know if I have any specific advice for you, but please try not to be scared. You are already on the right path by consuming a lower carb diet, but you do need to be careful of anything that contains gluten (that includes wheat, barley, rye and oats and any derivative of them, and spelt, kamut, and triticale). Be careful of malt too...that is almost always made from barley.

It can be very overwhelming at first, but it does get better eventually.

Thank you Donna. I guess feeling sick right now doesn't help me cope with this as well as I should. Hopefully all is well with my intestines and organs. I'm afraid I've had this for a long time and my body has suffered a lot from it.

I have to say that I do eat oatmeal every morning. Should I not? I love it though.

I posted but I don't see the post under Pre-Diagnosis, Testing and Symptoms. Any ideas as to why?

Thanks for the welcome,

Carol

[dlp252]

Thank you Donna. I guess feeling sick right now doesn't help me cope with this as well as I should. Hopefully all is well with my intestines and organs. I'm afraid I've had this for a long time and my body has suffered a lot from it.

I posted but I don't see the post under Pre-Diagnosis, Testing and Symptoms. Any ideas as to why?

Thanks for the welcome,

Carol

Very understandable...it's so difficult even when we're feeling good. I think most of us here have had either Celiac or Gluten Intolerance for many years and didn't know it because we didn't fit the standard criteria for it so the doctors didn't consider it.

[jerseyangel]

Carol--I just pinned your topic. Oatmeal is a topic that not everyone agrees on. My opinion is that I won't eat it--there is a good chance of cross contamination, and even with pure oats, there are some Celiacs that will react to the protein in the oats. For now, I would suggest you not eat them. Cream of Rice is good--topped with whatever you like--gluten-free, of course! Sounds like you've had a tough time of it getting the right dx. Celiac has a lot (200 or so) of symptoms, and a lot of us are diagnosed with other things--for years, in a lot of cases. I was ill for 20 years before I got dx. Now, it's important that you focus on being 100% gluten-free so you can begin to heal. Please, don't be afraid--this lifestyle is not hard once you get used to it. Read through the posts, there is a wealth of information. Feel free to ask anything--there are a lot of kind, knowledgeable people here.

[penguin]

Congratulations on your Celiac diagnosis! I know it sounds strange, crass even, to congratulate you for that, but think of it this way: now you know what's wrong and you know how to make it better!

The gluten-free diet isn't a big deal, really, when you get used to it and you learn how and what to eat. I've only been gluten-free two months, and while I've had my accidents, I overall feel great and I'm able to wean off some of my stomach drugs. My hypoglycemia (had it since puberty) went away within less than a month.

The average time it takes to diagnose celiac disease in the US is 11 years! Many here have been sick much longer than that, I was lucky, it only took three years. At any rate, most damage that has been done is totally reversible. Just ask some of the people here.

You're already halfway there with the diet you've been on, now you just have to eliminate the gluten. There are a lot of resources out there, including this board. Mainstream companies like Kraft, General Mills, and Unilever will always list gluten-containing ingredients and that makes life easier. Other companies keep lists, and yet others are dedicated gluten-free.

You can expect to live a full and happy life with Celiac! Going back to school? Go for it! Climbing Mt. Everest? Why not! Baking a loaf of gluten-free bread? Well, that'll take some practice, but it can be done

Glad you found us, there's a lot of great people and info here. Stick around!

[plantime]

Hi Carol, I'm Dessa, welcome to the board! It sounds like you are on the right track, now full steam ahead to better health! As far as the oatmeal goes, some can eat it, some can't. Perhaps you should try going without it for a few months, to give your body time to heal. Quaker brand and any generic brands are not good for celiacs at all, the crosscontamination is too high.

[elonwy]

Hi Carol, welcome. The good news is, its not Lupus. I'd rather have this than Lupus any day of the week. My cousin has it, and I got this, and I feel better than I did 6 months ago, having gone on the diet, and she's still struggling. It makes mesad, but also very grateful. There is an initial "I can't eat WHAT?" and then once you start feeling better it becomes easier.

Stay away from Quaker stuff. Evil people. I would wait on oatmeal until you're all healed and then MAYBE see, and only get them from an uncontaminated source. I tested oatmeal and had a similar reaction so I stay away from it.

The other good news is, this is a great resource, so again, welcome and I hope you feel better soon.

Elonwy

[mart]

Welcome aboard Carol! First, my little boy, who has Celiac, also had bleeding in his stool when he was born. The doctors said it was a casein allergy, and it went away after we switched his formula 8 times. I was shocked and saddened that my breast milk was not the perfect food for my baby. I'm wondering if maybe you were allergic to casein too and they just didn't know it? Anyway, I was frightened too when I found out my son had Celiac (diagnosed last September). I was sooooo overwhelmed, depressed, crying, etc. But now I know it's not so bad. You really do get used to this diet. Yeah, it's a bummer that we eat a lot at home now, but aside from soft bread, my son's not really missing out on anything!

You are on the road to recovery, now that you know what you have. And PLEASE PLEASE do go ahead with your plans of entering med school. We need doctors out there who are aware of Celiac Disease (and a cure would sure be nice). Also, you owe it to yourself. Yeah, your body is intolerant to gluten, but obviously you have a bright mind, and what a waste if you didn't go on to becoming what you want to be!

[mommida]

Wlecome! I hope that you will look back on the day you were diagnosed as your day of Liberation. You will have the knowledge to keep yourself healthy.

As for advice... Keep a food journal - you may react to different foods other than gluten, and many times you can make yourself crazy trying to figure out what made you sick.

Always keep a gluten free snack on hand with you.

You can get some lists of gluten free foods, but you will always have to read the label.

Laura

[Carolita]

Wow!!! Thank you all (Donna, Patti, Chelsea, Dessa, Elonwy, Mart, Laura) for the big welcome. It feels good to know I can count on a support group. Thank you!!

I'm feeling a little bit better today though I'm still very tired but I think it has to do with me not sleeping as much as I needed last night. I also did not feel very happy this morning when I didn’t have anything to eat for breakfast.

I have already started my new diet. I did go out to dinner with my husband last night and was very careful with what I ordered (Mexican food, corn tortillas instead of flour tortillas, steak fajitas, beans and rice, chips - no dip) but I did feel a little bit of indigestion later on, nothing I couldn't handle though. I did not have oatmeal this morning after about two years of eating that for breakfast (during the week, on the weekend I was eating McDonalds) and I do miss it. I don't think I'm allergic to it though since I was eating it even when I was feeling very good and it did not bother me. Also milk has not bother me as far as I can tell. I say that b/c when I have felt sick in the past milk has calmed my stomach problems. I have been feeling good since I started my yeast free / low carb diet but about two weeks ago I cheated and had Italian food (spaghetti and meat balls and calamari frito plus a big no no ... bread!) and I think that is what sent me back to square 1 two weeks ago. I'm just now feeling a little bit better (less brain fog).

Thank you for all the recommendations, I have read you guys one by one and made notes. I also have read some interesting posts about restaurants here on this site and read about PF Changs. I already mentioned it to my husband and I might try it out. I've never been but there is one very close by.

Well, I did not mention this yesterday but my father-in-law also has problems with gluten and he has had them since he was a kid. I always knew there were several things he couldn't eat but I never knew exactly what the whole situation was. Yesterday after getting my test results I talked to my husband and he told me that is what his father has as well. I called him last night and he told me he didn't have celiac disease but that he didn't have a certain protein needed for when you consumes gluten and that he can't eat anything with gluten in it or he gets REALLY sick. He confused me when he said that b/c that is what I thought celiac disease was. He said something about celiac disease was for when you were allergic to it??? Anyway ... I'm glad to have someone in the family I can ask questions as to what not to eat.

As for going back to school, thank you all for the encouragement. I've been planning so hard to go back that when I got sick again that was the first thing that came to mind. I was feeling so tired and weak that I thought it would be impossible for me to continue with my plans. I'm planning on going back next month to get my pre-requirements so I can apply to the masters program in Surgical Physician Assistant. One of the reasons I want to do this is because of what I've gone / I'm going thru so don't worry ... celiac disease will be on my mind. As a Surgical Physician Assistant you can work in any medical field and if given the chance I want to work in Pediatrics or Obstetrics. There are other diseases that will also be on my mind such as Lupus and MS since with my ANA being positive at one time, this were diseases I had to worry about. I still worry about them but I hope that I never have to live with any of them. Anyway, thank you for the encouragement. I love what Chelsea said about this "You can expect to live a full and happy life with Celiac! Going back to school? Go for it! Climbing Mt. Everest? Why not! Baking a loaf of gluten-free bread? Well, that'll take some practice, but it can be done." Thank you Chelsea.

I wish the best to all of you and your children and hopefully one day we can conquer celiac disease. I will be around learning from you and helping with what I can.

Thanks again,

Carol

[Ursa Major]

Hi Carol, and welcome to our board. While I agree with everything that has been said, I want to add that being gluten free involves more than just eating gluten free food. You will need to buy a new toaster for your gluten free bread, as it isn't possible to get the old one clean enough to be safe. You also need to replace any non-stick pots and pans if they have scratches, as again, you can't get them clean enough. Stainless steel is ideal because you can give it a proper scrubbing. If you use wooden cutting boards and wooden spoons, you shouldn't use them for your food any more, either, but buy new ones.

And you need to check all your cosmetics and personal care products (soap, shampoo, conditioner, lipstick, chapstick, toothpaste etc.). Everything with wheat germ oil, barley essence etc. (anything derived from gluten grains) needs to be replaced with gluten free products. There are several people here who couldn't get feeling completely better until they replaced the products that had hidden gluten in them.

Be careful not to kiss your husband if he has had gluten, some people got glutened that way! Make him brush his teeth and rinse his mouth first (poor guy, but he wouldn't want to make you sick, right?).

[TCA]

Welcome Carol! I do hope you follow through with being a Physician's Assistant - we need you!!!!

If you need help if finding gluten-free food, just let us know. We all have our favs and are eager to share. My guess is that you will feel so much better off of gluten that you won't want it again - I don't!

I second what Ursula said about the toiletries - Some curel lotion sent my dauter into a tailspin. We were completely gluten free in the house when it came to food, but the lotion we were using was poisoning her. We finally figured it out thanks to these great folks and she's doing great now.

[Rusla]

Welcome Carol,

Congratulations on finally finding out what has made you so sick. It does sound strange to say this but it was such a relief when I found out. This was because we now know how to keep ourselvess from getting sick.

Make sure you have no wheat or wheat glutens in your toothpaste, makeup, and other things.This is not the most horrible diet in the world, actually I find it easier than I thought. Yes, I get really sick when I get accidently glutened but believe me it stops me from craving gluten when only a crumb will make me so very ill.

This is a great board with lots of support. I hope you like it here.

[Carolita]

Hello Ursula, TCA and Rusla. Thank you for the welcome and the tips. The day I got the call from the nurse I was teasing my husband telling him that he couldn't kiss me anymore b/c he had eaten gluten. At the moment I was just teasing and then I thought about what I was saying and I realized it was probably something to really consider

My husband has been trying to follow the diet with me. Well, we started the yeast free / low carbs diet about a year ago when I was told I was allergic to yeast. I started to feel so much better after a while that I even felt like I was on the top of the world but almost three weeks ago we went out to eat italian food and that was the begining of another terrible episode. I'm still sick. I feel like I'm getting sicker every day and even after starting to cut out gluten stuff as well. This morning I woke up with terrible stomach pain. I thought I was having an apendicitis attack but after some peptobismol and tylenol, I felt better. I guess that is OK to take ... any ideas?

Anyway, I have looked at my toiletries and all seems to be gluten free but I'm not sure. Would it say "gluten" under the ingredients? I use Head & Shoulders shampoo, oil of olay soap (the hypoallergenic type), olay body quench body lotion (for sensitive skin) and Mentadent fluoride toothpaste with baking soda and peroxide. I don't know what to look for in the ingredients except for yeast, gluten and wheat. Is that all?

Anyway, since yesterday I have started feeling a little bit itchy again. I hate it. That is the worst. I'm afraid I will get worst before I get better. At this point I'm not very happy about all this but I guess it is good news that I know what is probably causing my problems. I still have to meet with my doctor on Thursday to discuss my test results.

TCA, I will try my best to continue with my PA plans. By the way, my husband is a PA student starting the program in August so if I don't get to continue with my plans at least will since he is already in the program and looking forward to it. Today he came home with two bags full of gluten / yeast free foods. I love him for it. He is very thoughtful and willing to help.

Thank you all again for your help. I really need all the support I can get right now I love this forum already.

Carol

[elonwy]

Unfortunately, with products, its alot harder to find the gluten than with food because it hides under alot of different names. It won't say "gluten" it'll be some rediculous scientific name or 15 ingredients down will be in tiny letters oat extract or something equally irritating. I personally don't use the products you do, or I'd have better info, but the best way to get the info is to call the manufacturor and ask. Some. like Unilever, say that all gluten will be clearly labeled which means it will clearly say "wheat, barley rye or oats" Thats good that its not hidden, but you still have to read every ingredient to check. Companies like Nuetrogena will send you a list of thier gluten free goods, and other companies will send you a list of stuff that HAS gluten. Its also important to call back regularly because companies change formulas all the time.

I use Garnier Fructis shampoo, Dove body wash, dove lotion, nuetrogena face lotion and sunscreen.

I read the ingredients every time EVEN if I've bought the product before.

I'd post some lists, but I'm at work and they're all at home. I'm sure someone will beat me to it.

Elonwy

[Carolita]

Thank you Elonwy. That is good to know. I think I'm going to have to start calling. If you can give me the list you have it would be great.

Thanks again,

Carol

[CMCM]

Actually....I try to look at this in a positive way: Celiac disease has a dietary cure and doesn't require drugs. And on a gluten free diet, celiac disease goes away.....at which point you only have a predisposition to it if the outside stressor (eating gluten) is added. So diet is the cure!

You just have to re-focus your ideas about eating...it's a bit daunting in the beginning, and then it gets easier. My Mom was diagnosed nearly 40 years ago and she says she never thinks about celiac any more...she just has her foods she eats, she checks labels, and that's it! It's just a small part of who she is. She has been strictly gluten free for 40 years and is now 85, healthy as a horse, and feels great.

Learn all you can about celiac disease and gluten sensitivity....as a PA you'll be in a wonderful position to spot possible celiacs and help them get a diagnosis quicker than most of us took....average in theU.S. is 11 years, and for many of us 25, 30 years or longer. I was 56 when I finally figured it out!

Hang in there and read all you can....you'll do fine!

[Carolita]

Hello CMCM.

Thanks for te encouragement. It is good to know that we can eventually (like your mom) live long and normal lives.

I'm hoping I can get into PA school but if I can't I will consider being a nurse and I will try helping as much that way. It is very hard to get in and yesterday I went to their orientation but it requires so so much that I'm afraid I might not make it. Anyway, I did talk to a couple of PAs a few days ago. They were trying to help out a patient with Chronic Fatige Syndrome and so I mentioned to them to test for Celiac disease since fatige is a very common symptom for it. So, I guess I'm already helping with this some how. My husband is in the PA program already so if he makes it, he will definitely have the opportunity to help those he will see with Celiac Disease symptoms. He is reasearching a lot with me and he is also following the diet since that will make it easier for me. He is a great guy.

Thanks again,

Carol