Advice Would Be Sooo Appreciated!

[SugarBiscuit]

Hi, my name is Jessica, and I am in need of advice, if anyone has the time.

I have been ill on and off since I was a child. I am adopted, so I have no medical background on my parents. My mom says that as a baby, I had colic, and had to be fed soy milk. I was also a fairly irritable child, and went to the doctor many times with constipation for weeks at a time and kidney infections. I also have had flat fingernails and red bumps on my upper arms since childhood, which I am told are signs of anemia.

I was very small until the 5th or 6th grade, and then I suddenly ballooned to 100 lbs over a summer break. I was taken to the doctor, where he checked me for diabetes, and then said that I was just fat and sent me to a nutritionist. My mother was baffled, as I played every sport available, and was very active. After that I continued to have stomach issues, and as a teenager, I never started my period. I was diagnosed with PCOS. I also started getting migraines, and my stomach began to alternate between being constipated for days and diarrhea. The diarrhea was abnormally urgent, and painful. It would feel as if someone was stabbing me in the abdomen, and on one occasion, during a long commute, I had to pull over and use the bathroom in the woods. I also developed severe acne, which went away after I started using hypoallergenic shampoo and conditioner, which I thought was just because I had sensitive skin. I was also diagnosed with depression right around this time as well.

Let me just say that through all of this, I had been eating gluten very heavily. Pasta was my favorite, but my mother was also a big pusher of bread, grains, and barley. In my 20's, I barely had any money, so I began just eating fruits and veggies from the farmers market. I was not sick that entire time. Then I started dating my husband.

My husband eats basically nothing but gluten. Since I have been cooking for him all the time, I have been eating lots of breads, pizza, pastas, tacos with flour tortillas, and sandwiches. Looking back on it, from when we started dating my health has went markedly downhill. I even had to quit two jobs because I was having serious joint issues with my hands and knees. The were tingling and numb sometimes, and at night I would wake because my hand would feel like it was on fire. This definitely was abnormal because up until I got sicker, I worked out about an hour a day, walked, and had no issues. I am only 27, so I shouldn't have arthritis. Things just got worse until I hit an all time low last month.

I also was having another kidney infection. I went to a clinic, and I told the doctor about my issues, and that I believed something was seriously wrong. He basically ignored my request to do some blood tests to find out what was wrong, and prescribed me with two antibiotics. After finishing the antibiotics, I got even worse. I had diarrhea for 4 weeks, a migraine that lasted near a week, and would fall asleep as soon as I was sitting down. This whole time, I was eating Subway and bread products, thinking that if I ate something more solid, my diarrhea would stop. It escalated to the point that I was in the bathroom 10 or 15 times a night. My stomach also became huge, and my mother in law kept asking me if I was pregnant. I went through my clothing, and none of my pants fit.

I was terrified that I had cancer, and spent a lot of time researching my symptoms, which were seemingly random, until I came across Celiac Disease. I have most of the symptoms, but I cannot afford to go to the doctor until my husband gets paid again. But since I was miserable, I decided to just try a gluten-free diet for a week and see what happened.

It has only been 4 days, and my diarrhea has stopped. So have my stomach cramps, and my exhaustion. My stomach has gone down a considerable size, and I no longer look pregnant, just chubby. In fact, I have honestly not felt this good, or had this much energy since I was a child. I know this is a long story, but I just wanted to provide background so that everyone would know why I am fairly sure I have Celiac. So now I have several questions, and would be so grateful if someone could help me out.

Firstly, does it sound to anyone with Celiac like I have similar symptoms? Also, if I do have it, can I bypass the doctor and just eat gluten free forever, or is it necessary that I go? I know that they run some tests, so I also have questions about that. If I need to go have testing done, do I need to eat gluten again, or will I be okay eating gluten free, if I plan on going in two to three weeks? My last question concerns genetics. If the testing is based on genetics, will they be able to complete it, since I am adopted and do not have a family medical history or records? I would really appreciate any help I can get with these questions.

[Cara in Boston]

Your symptoms sound very much like you could have Celiac Disease or Gluten Intolerance. If you feel better avoiding gluten, then avoid gluten. You do not need permission from a doctor to follow the gluten-free diet and if you are somehow wrong, the diet is not unhealthy, so no harm done.

However, if you want to pursue getting tested, you need to resume eating gluten ASAP and continue eating a "normal" amount until testing is complete.

I went through the testing process with my son (7) and it took several months - it was hard to continue to feed him food that I knew was making him sick. I felt we needed a "real" diagnosis because he has years and years of school, summer camp, college dorms, etc. to navigate and a doctor's note will be necessary to make sure everyone complies. (He did test positive for celiac disease on his blood test and endoscopy) For me, once I got my blood tests back, that was enough. No need to continue with testing, my symptoms went away when I stopped eating gluten and that was good enough for me.

Some people need a clear diagnosis to motivate them to stick to the diet. If you are not one of those people, I would just do whatever makes you feel good.

I'm not sure if the genetic test would be that useful to you. The way I understand it, it only indicates if you are likely to possibly develop celiac disease at some time in your life, but they are finding there are lots of exceptions - people without the genes can still get it, people with the genes might never get it, etc. etc.

If you determine (on your own or with a doctor's diagnosis) that you are (at least) gluten sensitive and are worried about your (future) children, I would suggested you just stay really informed (sounds like you already are) and watch for any signs or symptoms that might indicate they have it too - then you will know to request testing right away.

One of my boys has celiac disease, the other has tested negative. I know what to look for and even in the absence of symptoms, he will be re-tested every couple of years.

Hope this makes sense. Hope you are feeling better soon.

Cara

[kmccormick61583]

hello..

i am new to this forum and am in the same boat as you

sick for better part of my life..resources limited....

you had the same experience i did.....a long time of illness then a few weeks of udder hell then ...whats this? gluten free diet makes me feel like a semi normal person again?

my advice....stay with gluten free diet.....

ask alot of questions here.....

people on this site are very very friendly and helpful.....

kyle

[squirmingitch]

I will echo what Cara says. And say that you need to decide if you NEED to have that official diagnosis. If you don't then go gluten free & enjoy your life if gluten-free makes you feel good. If you think you will later regret not getting that official diagnosis then you should eat gluten now & until testing is finished. If you wait & decide in a few years that you want to be tested then from all I have read of people's reactions ---- it will go very hard on you to go back to eating gluten; worse than your reactions now. So think hard about what you need to do for you.

[SugarBiscuit]

Thanks everyone, I really appreciate it. It has been a few more days, and I feel even better. Since I have not other issues that are really serious, other than PCOS, at this point, I'm not sure if I want to even go to the doctor. My main reason I thought I needed to go were my frequent headaches, which are now gone. I have also been reading about people that are having to eat gluten to get a diagnosis, and it sounds horrible.

I told my husband that I would rather be gluten free my entire life than have another week of symptoms. I feel like as long as I know what is wrong, and can keep from becoming ill again, that is enough for me. And I am becoming more and more sure that gluten is the issue. My red bumps are already starting to fade on my arms, and I know this is weird too, but my skin feels way softer. Last night, I was throwing away my old soap, and as soon as I picked it up, I started sneezing. So I am thinking that gluten has to be the issue, as I looked at an unopened bar of my old soap, and it contained gluten.

I am just very grateful to finally know what is wrong. I have spent the last year or two believing that I might be dying, and being frustrated because no doctor I went to would listen to me.

Besides that, I actually really enjoy eating gluten free. Sure, I miss pasta, but I grew up in a household where we had an acre garden, so I know many ways of preparing fruits and veggies, and I have also been gathering some gluten free recipes online. Plus, I live in an area that carries a lot of organic and gluten free foods, so I am lucky. The only thing I noticed is that it is very expensive if you start buying pre-packaged gluten free meals, or substitute foods like gluten-free pretzels. So I just bought things that are naturally gluten free and I am making other things from scratch.

[Bubba's Mom]

Your symptoms sure sound like Celiac. I echo what the others have said though. If you want to be tested, now is the time to do it. You would have a few symptoms going back on gluten, but not anywhere as severe if you get it out of your system completly and then want to add it back to be tested later.

Why would you want to test later? Because as you feel better and better you may start to second-guess if gluten is your problem, and get lax with the diet or cc issues. If you have Celiac, and start to consume it again, you've opened the door to additional auto-immune diseases, etc.

It also helps your Dr. diagnose any future symptoms you have, and if you have children will let you know if they are at risk.

It's a hard decision to make, and it's one you'll have to consider and decide. If it were me, I'd rather know for sure, just to know how careful I'd have to be.

[SugarBiscuit]

Your symptoms sure sound like Celiac. I echo what the others have said though. If you want to be tested, now is the time to do it. You would have a few symptoms going back on gluten, but not anywhere as severe if you get it out of your system completly and then want to add it back to be tested later.

Why would you want to test later? Because as you feel better and better you may start to second-guess if gluten is your problem, and get lax with the diet or cc issues. If you have Celiac, and start to consume it again, you've opened the door to additional auto-immune diseases, etc.

It also helps your Dr. diagnose any future symptoms you have, and if you have children will let you know if they are at risk.

It's a hard decision to make, and it's one you'll have to consider and decide. If it were me, I'd rather know for sure, just to know how careful I'd have to be.

Yeah, I will have to think about it. I guess I am just dreading the doctor because for the past two or three years, I have been visiting doctors who will not listen to me. This last one was the worst. I told him all of my symptoms and he said, " It doesn't sound like anything I've ever heard of, I think you are just borrowing trouble. You just have a urinary tract infection and you need to take antibiotics. You will be fine after that." I told him I was adopted, so I had no family medical history to rule out genetic disorders, and that I have been having kidney issues since childhood, and also, that I was also having severe stomach issues. I explained that I have PCOS, and that I have not had a period for 4 years and have large cysts on my ovaries. I requested that he run tests and told him that I believed something was seriously wrong. I also voiced my concerns that I might have ovarian cancer, based on frequent urination, back pain, increased abdominal girth, and several other issues that also commonly appear in Celiac. He told me that he was the doctor, not me, and that urinary issues, bloating, and back pain have nothing to do with Ovarian Cancer. These are the first warning signs!!

I also asked if it might be possible years ago that had some kind of allergy because of the red bumps on my arms. A dermatologist told me that it was an "Indian Person's Disease", and that it is because my birth mother was white, and my birth father was Native American, and that those two races breeding causes genetic deformities.

So really, I am just not eager to begin dealing with doctors again. Really, I do believe I have Celiac, and just that knowledge is enough for me. If I can find a good doctor here in Iowa City, I will consider it, but I am really stressed out just thinking about having to fight with these people. Plus, my husband and I have limited resources right now, so I am worried that if I have to Doctor Hunt, it may result in multiple co-pays that we cannot afford. I'm a CNA, and I haven't been working because I have been too sick, and my joint issues caused me to fail a physical the last time I applied for a job. We are on one income right now, so I know it will at least be 2 or 3 weeks until I can even schedule an appointment. I don't know if I am willing to be sick for that long again, just to deal with possible quackery again, and get told that everything is in my own head.

[squirmingitch]

It sounds like you have really done your homework here on the site & reading up a lot so you can be informed. Very GOOD!

I'm sooooo upset at what the doctors said to you & especially the one who said you have an "Indian Person's Disease"!!!!!!!! I don't know how you managed to control your temper upon hearing something like that! O M G !!!!!!!!!!!!!!! I'm so angry that anyone would make a statement like that much less a doctor. There are words I can not say here but I sure am thinking them!

I've read some real "dillys" on here that doctors have said & this one is right up there with the top of the list.

Well, darlin', you have to decide & you need to be sure your hubby is 100% behind you & HE won't be wondering later. And don't forget that you can always do your own gluten challenge after you're gluten free for several months. you can go back on it & see what happens but you wouldn't have to stay on it as long as you would if you were to go for testing ( which is 3 months).

We're here. Remember that. And let us know what happens.

[Bubba's Mom]

Yeah, I will have to think about it. I guess I am just dreading the doctor because for the past two or three years, I have been visiting doctors who will not listen to me. This last one was the worst. I told him all of my symptoms and he said, " It doesn't sound like anything I've ever heard of, I think you are just borrowing trouble. You just have a urinary tract infection and you need to take antibiotics. You will be fine after that." I told him I was adopted, so I had no family medical history to rule out genetic disorders, and that I have been having kidney issues since childhood, and also, that I was also having severe stomach issues. I explained that I have PCOS, and that I have not had a period for 4 years and have large cysts on my ovaries. I requested that he run tests and told him that I believed something was seriously wrong. I also voiced my concerns that I might have ovarian cancer, based on frequent urination, back pain, increased abdominal girth, and several other issues that also commonly appear in Celiac. He told me that he was the doctor, not me, and that urinary issues, bloating, and back pain have nothing to do with Ovarian Cancer. These are the first warning signs!!

I also asked if it might be possible years ago that had some kind of allergy because of the red bumps on my arms. A dermatologist told me that it was an "Indian Person's Disease", and that it is because my birth mother was white, and my birth father was Native American, and that those two races breeding causes genetic deformities.

So really, I am just not eager to begin dealing with doctors again. Really, I do believe I have Celiac, and just that knowledge is enough for me. If I can find a good doctor here in Iowa City, I will consider it, but I am really stressed out just thinking about having to fight with these people. Plus, my husband and I have limited resources right now, so I am worried that if I have to Doctor Hunt, it may result in multiple co-pays that we cannot afford. I'm a CNA, and I haven't been working because I have been too sick, and my joint issues caused me to fail a physical the last time I applied for a job. We are on one income right now, so I know it will at least be 2 or 3 weeks until I can even schedule an appointment. I don't know if I am willing to be sick for that long again, just to deal with possible quackery again, and get told that everything is in my own head.

How do we manage to find these horrible Dr.s..and how do they stay in business? I've had my share of mis-diagnosis too. I got the "it's all in your head", "it's just hormones", "eat Tums" etc. too. It's really frustrating!

So many of your symptoms *could* be Celiac. The problem is..they could be something else too? Most Dr.s don't think to test for Celiac..especially when you have symptoms that aren't the "classic" ones they skim over in medical school.

If you go to a Dr. and tell them you need a full Celiac blood panel drawn, they should be able to order it for you. Take a look at the symptom list and write down those that apply to you, and show it to the Dr. if you think it will help get the Dr. to order the tests.

https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html

For hereditary illnesses they can test for them by looking at your genes, and various blood levels, especially like with Celiac. You don't need to know your family history for the tests to be run. Family histories really just help you know what things to look out for as possible red flags as far as illnesses go.

[dani nero]

I know how you feel about going back to the doctor. I'm on the same boat right now. I'm in the queue for an appointment and I'm dreading every minute of waiting because I might end up with another smug-smiling doctor. A diagnoses might be worth in the long run though. Maybe continue to eat gluten until you get some leverage?

Here's what happened to me: I went on the diet without being diagnosed and now I'm TERRIFIED of having to eat gluten again because I saw how tough it gets to get glutened after starting the diet..

After a period of feeling better, I moved on to feeling not so great because being gluten free doesn't mean you've reached the happy ending just yet. It's a very bumpy ride since other food intolerance and problems might surface which will effect your ability to function, which is what is happening to me right now, and also means that I'll need that diagnoses after all because I'm likely to have trouble keeping up with school deadlines when I'm not feeling well.

I think that perhaps since you're not gluten-free yet it would be a good idea to test yourself before it gets too hard. If you ever find out that you need this diagnosis for something, you'll have to put aside maybe six more months of your life.

By the way I also had period problems, and being gluten free seems to be fixing that. I read somewhere on this forum that someone had PCOS, and that also disappeared when they went gluten free.

Good luck, and let us know what you decide :-)