Newbie-need Help Support

[rachellek]

Hi, I'm new to this site and new to Celiac Disease. I feel so alone and really need some support from people who can understand. Here goes...

I've been sick for 10 years and finally figured it out on my own 6 months ago. I went off gluten and feel like a normal person again. Anyways, I finally got into a gastroenterologist and he recommended biopsies for me even though I've been gluten free. In order to have a valid result, I needed to eat gluten for ONE WHOLE MONTH. Well, you can guess what's happened to me in the last few days. I ate 2 cookies made of flour and a peice of breaded chicken nugget. I FEEL LIKE I GOT RAN OVER BY A TRUCK AND AM IN THE PROCESS OF DYING. My symptoms run the gammut from bloating, nausea, constipation, diarrhea to tunnel vision, dizziness, spacey headedness, no memory, headaches, hair loss in clumps and an uncomfortable buzzing feeling in my whole body that makes me just want to jump out of my skin.

Why am I posting here? I need some advice on whether I should continue or not. How can I possibly carry on eating gluten for a month? I felt unsafe driving my kids to soccer and dancing last night. Is there a benefit to a doctor written diagnosis or is my body's response all I need. Do you think I have celiac or just food intolerances? I've also been having blood glucose issues in the past month that I don't know how to handle. I think I'm hypoglycemic at certain times after eating something sweet (even an orange) so, do I cut out fruit and all sugar too?

If those questions are too complex for anyone to answer, here are some more general ones. What types of vinegar can I trust? Is regular white vinegar malt vinegar? what about vinegar in store bought salad dressing. Is maltodextrin gluten free? What other sources of hidden gluten have you encountered that you were surprised by (I read all ingredients all the time). Do many of you have high risk for osteoporosis? If so, what have you done or taken to help? (I was scanned last week and am in the high risk category although I'm only 33).

Last but not least ...why did this happen to me, no one in my family has ever had any of these problems and they all think I'm absolutely loony I'm sure. I really feel alone.

Thank you thank you thank you for what ever answers you can give me! I would appreciate it so much!

Rachelle

[wolfie]

Hi Rachelle!! Welcome!

Your story sounds a lot like mine, although I did get a positive on one of the blood tests, but went gluten-free without speaking to the gastro first. Then, of course, the gastro wanted me back on gluten to biopsy. I was feeling so good that I opted not to at that point in time. I did consider it recently, though, b/c my kids Ped wouldn't test them unless I had a confirmed diagnosis of Celiac. I ate 1 Triscuit to test the waters and see whether I would be able to handle eating the equivalent of 4 pieces of bread for 1 month plus. I was sick from that, so there is no way in heck I am doing that to myself. The end result is the same...a. gluten-free diet. It is very apparent to me that I can't have gluten. I have had an extremely positive dietary response. I relayed this all to the kids Ped and he finally agreed to test my son b/c he does have some symptoms that could be related.

So, here is my personal opinion.......unless you need that concrete evidence of Celiac for yourself to be able to stick to your diet or for knowledge for your family, I wouldn't continue to torture yourself. It seems that it is obvious to you that you have at the very least a gluten intolerance.

(((HUGS)))

[AndreaB]

Welcome Rachelle,

You will find a lot of loving, helpful people on this forum. I can only respond by what I have read. Many people have said if you feel better on the gluten free diet than take that as a dx unless you firmly need it in writing. It's not worth all the agony you're going through (in my opinion) to continue with gluten for a month.

Also, yours and your children's safety is more important if gluten throws you for such a loop. I've never had symptoms to speak of, but showed up allergic which is why I cut it out. My son had developed eczema which has almost completely cleared up with me leaving off of soy and gluten. We've just sent out our enterolab kits so we'll find out whether I could have developed a worse case if I had continued on the diet (ie, if my son hadn't reacted).

Enterolab does tests on the stool and also gene tests for celiac. You don't have to go back on gluten for them. You'd have to find out whether your insurance would cover any of it if you don't want to pay for it out of pocket. Their website is www.enterolab.com if you want to read up on it.

Welcome again and enjoy the community here!

[wolfie]

Forgot to answer some of your other questions...sorry!

Malt vinegar is not okay. You can find lists for Forbidden Foods and Safe Foods on this site

https://www.celiac.com/st_main.html?p_catid...-49106487062.6e

Also, you can find lists of foods that are confirmed gluten-free on the delphi forums......I don't have the link readily available, but I will see if I can find it and post it.

[TCA]

I agree with other's replies. It is something you have to decide for yourself. I do hope you feel better soon. I hate that your family isn't supporting you. We went through that with the kids until they all saw how much better they were doing without gluten, now they're believers too.

[kabowman]

I personally chose NOT to go back on gluten for a formal DX - my biopsy was negative and I have never had blood tests. My son's doctor, based on some of their info and my info, tested my oldest and it was negative...luckily. My docs warned and chatted and I said no.

Another comment - you wonder why this is only you in your family? Well, when I mentioned my food discoveries to my mom, she said, oh, my mom did that - we were always amazed at how big her stomach would get after eating from all the bloating - she looked pregnant.

Since my "coming out" so to speak, my maternal aunt has found out she is gluten intolerant but no dx for her either. My sister and mother both have horrible stomach problems and know that food is to blame but are not willing to go through and elimination the discovery process.

My mom will call and tell me she has been sick for over 7 weeks but every time she starts to feel beter, she goes back to her old eating habits and gets sick all over again. I have no sympathy for her now...she could get better but choses not to. My kids know, that if they knowingly eat something that bothers their tummy (beans, nitrates, cinnamon for one, lactose for the other) then it is their fault, they knew better, they can't really complain. Hard core but it works - they don't eat that food when they are with me.

Just a thought...not everyone is aware of what is going in their bodies and what is going on with their bodies so it isn't talked about because there are a lot of very unplesant side effects to food issues.

[Nicole11]

I hear you 100%! I have been having a really hard time with the same things. My family...every member is a self proclaimed "meat-etarian". I was raised believing that white bread is healthy! I found out I was a Celiac about 3 months ago. As soon as I went A-wall, I felt better than I had in years. My naturopath would not have tested me if I didn't tell her to. That's right, I had to tell her to. When I went in for my results, she had printed out information from this site to explain my disease because she knew so little about it. Since I don't have health insurance, I couldn't go right in for a biopsy. I thought I was allergic to everything also. Could not eat a whole piece of fruit, no juice, no tuna, beans. I was down to broccoli with onions and garlic. That was the only thing my body liked. I was nodding off while driving. My kids go to school 45 minutes from my house! Nobody could fathom how I felt...even my boyfriend didn't take me seriously. Doctors all but laughed at me when I asked them to test me for diabetes, or anemia or anything. I am not over or under weight, seemingly healthy. My naturopath noticed that some of my symptoms (extreme fatigue, neck and head aches, night sweats, dark circles under my eyes, never feeling rested or sleeping through the night, mood swings, dizziness, cloudy mind, forgetfullness, coated tongue, hot flashes throughout the day) were consistent with liver malfunction. I really started to feel better after she started me on a liver cleansing diet with some herbal supplements to help detoxify. All of the toxins that had been flowing through my liver for so long, have damaged it so extensively, i have got to slowly detox my liver. It's amazing how much emotion is stored in your liver.

A few days ago I got a grant from my company to get more medical care. The next day I went to see a doctor who told me the same thing. "Here, eat this at this time...blah blah blah..." All I could say is "I can't do that. He wondered why not. So, after explaining like I was five again, I ate the breakfast sandwich. As much as I wanted to throw it up...I had a big whole wheat sub sandwich with beef for lunch...I was already in pain. Not from the needles, or poking and prodding. He tried to be empathetic but it was a sorry attempt. I told him I am not a hypochondriac. He just noted. Yesterday while driving to pick up kids, I nodded off in the school zone! I've got a meeting today and can't list all of the topics. Needless to say, there is no way I can go back on wheat. I don't care if I have a biopsy. I have been doing my own research, buying books and trying to figure this out. I did meet one woman in my town whom has to get blood transfusions every few months, has osteoporosis, etc. It's scary. I need a doctor that knows about the effects of this disease in every stage.

I'm not sure if you're interested in some of my simple ideas for meals and snacks that your kids will like also, but feel free to email as often as you like. It takes a village.

The key...Liver detox herbs, vitamin c, lots of water.

Can't wait to hear back!

Nicole11

[CarlaB]

Rachel, I was gluten-free for months, wheat-free for three years. My blood test came out negative. I did a six-week gluten-challenge and could not drive for several weeks because I was constantly intoxicated from the gluten (I could drive early in the day, my hubby drove me around at night). Six weeks was not long enough, negative biopsy. I went to Enterolab and found out I did have a gluten intolerance. Four weeks is probably not long enough. I am having two of my kids tested. Their schools don't need a note and have been supportive without one.

My family thinks I'm loony ... but they thought that before ... many of them have symptoms and won't be checked.

There are other threads about hypoglycemia that would have great info for you ... maybe someone else can post a link since I don't know how to do that ... anyway, my understanding is (since I also have those tendencies) to have a balance of protein with your carbs and fat. So, eat a steak with that Haagen Dazs!!

[TaraT]

Hi Rachelle,

I just joined the forum today too, after self-diagnosing 6 weeks ago. I could give you all my symptoms, but brain fog, no memory, and HORRIBLE digestive problems top the list. I made an appointment w/my doctor, and did some research on the web before I went. I THOUGHT it may be celiac, and when I went to him the next day he reseached on the web in his office, and said try getting off gluten for a few weeks and see how you feel. It took two days to be absolutely sure. I can think again and I feel better than I've EVER felt (I'm 51).

Something that he and I discussed was that because of the genetic association to a lot of other diseases, why have it on my medical records if I don't need to? I know a woman who was diagnosed with Lupus, even though she has no symptoms, and can't get health insurance. If I were having to cut out HEALTHY foods, it would be different, but I've just eliminated all of the least healthy part of my diet. I think a lot of MD's think it's not really if you didn't have a test, but if you know, which you do, go with your gut (no pun intended!). So for me, there will be no tests, but there will also be no gluten.

Tara

[Canadian Karen]

Hi Rachelle!

You have gotten great advice so far.

My personal opinion on the whole "official diagnosis" thing is that unless you need it for insurance purposes, to get subsidies for gluten free food, etc. then perhaps the hell you will go through will be worth it. But keep one thing in mind (well, actually, two..... ) First off, there are many, many false negatives in the bloodwork. Also, biopsies are very unreliable. The damage can be spotty, sporadic in your digestive system. They go in and take X number of biopsies, you have a 50/50 chance of them hitting a damaged spot. Picture having a rash on your back and the doctor was going to biopsy it blindfolded. It would be hit or miss as to whether he hits part of the rash or not....... So unless ABSOLUTELY necessary, I wouldn't go through the hell.....

Regarding dressings - most of us trust and love Kraft. Kraft is a very celiac friendly company. They will ALWAY list if there is any gluten sources in their products.....

Also, make sure you have your own toaster (crumbs will make you sick), check your medications, over the counter and prescription (I was taking Gas-X Chewable Tablets like candy for my gas and it turns out they had gluten in it! The softgels are okay for us though.....) Other weird stuff: don't lick envelopes or stamps (the glue sometimes contains gluten), shampoos, face creams, make-up, lipstick, vitamins.....

Lastly, don't hesitate to ask questions! We'll help out any way we can!

Oh, and maybe PM nini, she has a newbie package she will e-mail out to you that includes the delphi list, which is a must have! It is a list of gluten free foods that is in a convenient category format and you would be absolutely amazed at the mainstream supermarket items we are allowed to have!

Welcome!

Karen

[Ursa Major]

Hi Rachelle, and welcome to this board! I agree with everything that has been said previously. Unless you really need that official diagnosis, my advice is, to stop eating the gluten immediately. It's obviously making you very ill and unable to function. Therefore, the logical conclusion would be, that you can't tolerate it and shouldn't be eating it. You don't need a doctor's permission to be on the gluten-free diet.

I never had the bloodwork or biopsies done either (okay, I am waiting for the result of a skin biopsy for DH, but even if it's negative, I won't go back on gluten). I don't care what doctors say, I feel so much better! I diagnosed myself at the age of 52, because doctors are so clueless.

My advice for being at high risk for osteoporosis is, to make sure you have your vitamin D levels checked, as well as your calcium and magnesium levels. If you don't have enough vitamin D stored in your body, you can't use the calcium. People with celiac disease are notoriously deficient in vitamin D, which in turn leads to osteoporosis. Get lots of sunshine, and supplement with vitamin D if necessary (get your levels checked before supplementing).

I don't think maltodextrin is safe, but I may be wrong.