Newbie Here With Some Suspicions

[Laurasc]

Hi all! I'm Laura and I'm a relatively healthy 43 year old woman who has been feeling absolutely HORRID for the past few months.

I've been doing some research on gluten intolerance and celiac and have been trying very hard not fall victim to "Med Student's Disease." (I'm a nurse and when I was a student several classmates and I came up with the name of "Med Student's Disease" to describe our self-diagnosing of diseases as we learned them. It was particularly bad when we did Psychiatry.... ) Which is why I am here...I'd like to run some of the symptoms I've been experiencing by you all and see if I'm on the right track.

I was diagnosed with IBS years ago. Nasty cramps, funky stools, diarrhea one day followed by horrid constipation the next. Over the past few months I've added unbelievable fatigue, brain fog (someone here posted how she can't carry on a conversation without problems...I can relate big time), nausea, vertigo and nasty, nasty pains in my pelvis radiating up my left side. A couple of weeks ago I had an "attack" that left me feeling like the whole mid to left side of my abdomen was swollen. It hurt to even roll over in bed and walk. That lasted about 2 or 3 days and went away. And then there's the gas....gas so bad I feel and look like the Good Year Blimp. Two days ago we had some hamburgers for supper and within a couple of hours my abdomen started to hurt and inflate. It was so bad I could barely walk and my very loose jeans were so tight I had to undo them. I haven't lost weight, in fact, I've gained it and I'm not sure why considering I don't eat a whole lot.

I'm also hypothyroid (I have Hashimoto's thyroiditis) and have been for almost 14 years. My thyroid function was tested last week and it's perfect. I'm also perimenopausal and drink a big glass of soy milk to help with the symptoms.

A few days ago my hubby asked if I was possibly gluten intolerant. When I think about it, I usually feel worse after I eat and we eat wheat products in almost every meal. (I almost always have Special K with berries for breakfast, a sandwich for lunch and supper usually same something with wheat or wheat flour in it.) So yesterday I decided to cut out all the gluten from my diet to see how it goes. This morning I'm feeling okay, still a little dizzy but okay otherwise. I'm a little constipated still but I don't expect my bowels to bounce back right away. I did notice that for the first time in a while, I was feeling not bad last night which is unusual. (again, it could be all in my mind...so I won't pass judgment yet.) I'm also keeping a food journal.

Does all this sound familiar to you all? I know that celiac and/or gluten intolerance can be hard to diagnose and I'm not asking for a diagnosis but I just want to make sure that I'm heading in the right direction at least suspecting this.

My problems are compounded by the fact that I have a new doctor and getting an appointment with her makes pulling teeth look easy. Unfortunately, doctors are such a rare commodity here that I'm really fortunate to have one.

Thanks in advance for any advice you can offer.

[aikiducky]

Hi Laura, welcome!

For what it's worth, I think your symptoms sound very typical of celiac or gluten intolerance. You might want to think about getting tested, or failing that, trying the diet and then challenging with gluten a few weeks later. Don't go gluten free if you plan to be tested! Good luck!

Pauliina

[Laurasc]

Hi Laura, welcome!

For what it's worth, I think your symptoms sound very typical of celiac or gluten intolerance. You might want to think about getting tested, or failing that, trying the diet and then challenging with gluten a few weeks later. Don't go gluten free if you plan to be tested! Good luck!

Pauliina

Thank you for your very prompt reply. I figure I'll be lucky to get an appointment with my new doctor some time in August, so do you think it would be okay to try to go gluten-free for about a month then start on the gluten again a few weeks prior?

You know, I spent yesterday reading the labels of all the food in my pantry. I was AMAZED at where I found wheat products. Even in the powdered chicken stock mix I used all the time. This is going to be harder to do than I thought.

Thanks again,

Laura

[rinne]

When it comes to Celiac it seems many must be their own Doctors. I'm very new to this and definitely fall into the category of "Med Student's Disease" as far as self-diagnosis goes although I did have a little help with the Doctor asking me about Celiac and my family, I have a sister who is diagnosed with Celiac and IBS. I also have the classic "melting" and a lifelong history of problems with wheat. If you read the medical histories of people posting on this board you will see many who had diagnosis after diagnosis of other problems before doctors identified Celiac. Trust your own gut.

And welcome, this is a great board with many knowledgeable people.

[jerseyangel]

Hi Laura! Welcome to the board

Up until your doctor's appt in August, please do not try to go gluten-free or even "gluten lite"! Eat as you normally would--I know how hard that is after getting a "taste" of feeling better, but to go off gluten, and then right back on again for a test will most likely skew the results. I'm sure you want the best chance for an accurate diagnosis

Good luck, and keep us posted

[Laurasc]

Hi Laura! Welcome to the board

Up until your doctor's appt in August, please do not try to go gluten-free or even "gluten lite"! Eat as you normally would--I know how hard that is after getting a "taste" of feeling better, but to go off gluten, and then right back on again for a test will most likely skew the results. I'm sure you want the best chance for an accurate diagnosis

Good luck, and keep us posted

The thing is that I'm trying to figure out if it really is the gluten and not something else that's causing me problems. This is my 3rd day gluten free and I find that my energy level is better and that the worst of the nausea and vertigo is gone. I did wake up with abdominal pains this morning but that went away when I "went" ...first "normal" one in a long time.

This really bugs me...I live in Montreal and Montreal has the best bagels in the world. I could literally LIVE on those bagels. No more....

I'll stay gluten free another couple of days then go back to normal to see what happens. If I get sick again, then I'll call my doc and make an appointment...which will be (if I'm lucky) 6 weeks away.

Thanks

Laura

[Guest Robbin]

Hi and welcome!! Please do not make the mistake I did and go gluten free before blood tests. You have to eat the equivalent of three to five pieces of bread a day from what I gather from this forum to keep the tests accurate. (Is this accurate everyone?) I know it is hard when you feel so good off the stuff, but maybe a last bagel binge. (There are some decent gluten-free bagel recipes btw) Take care and keep us posted

That is so funny re: the med student disease--I took some med course-work and we called it Merck manual disease.

[AndreaB]

Laura,

Welcome!

It sounds like you may have found the culprit. Please keep us posted on how you do in a few days after you add back in gluten as well as your appointment.

Good luck and keep on reading this forum so you will have some of the basics down when you are ready to go gluten free for good.

[Laurasc]

Hi and welcome!! Please do not make the mistake I did and go gluten free before blood tests. You have to eat the equivalent of three to five pieces of bread a day from what I gather from this forum to keep the tests accurate. (Is this accurate everyone?) I know it is hard when you feel so good off the stuff, but maybe a last bagel binge. (There are some decent gluten-free bagel recipes btw) Take care and keep us posted

That is so funny re: the med student disease--I took some med course-work and we called it Merck manual disease.

5 pieces of bread a day? Believe me when I tell you that for me that is NO hardship at all. I'll pig out on bagels and cream cheese...or better still bagels with bacon and cheese. Y-U-M-M-Y-Y-Y-Y!

Good luck and keep on reading this forum so you will have some of the basics down when you are ready to go gluten free for good.

You know, this is not going to be easy for me. I went shopping for some groceries yesterday and was amazed at how little real gluten-free stuff you can find. There's an oriental specialty food shop a few minutes walk from my house, I think I'm going to poke around in there to see what I can find.

My family and I have always loved pasta. Yesterday I made spaghetti with meat sauce for my family but I ended up eating chinese rice noodles with the meat sauce. It was okay. Then for dessert they had a Twix ice cream on a sugar cone (Twix ice cream that I bought for me).

I'm having trouble now when the gluten free is temporary...I don't know what I'm going to do if it turns out to be permanent.

Laura

[AndreaB]

It will get easier as time goes by...but you will have those times you get depressed or down about not being able to eat just any ol thing. Do you have tinkyada pasta? If you can't find anything nearby, there are choices to order online to get gluten free stuff. It all depends on what your looking for. If you knew what you wanted I would even be willing to go to the gluten free store 1/2 hour south of us and pick up stuff for you and ship it UPS or USPS Parcel Economy. I would have to compare prices and see if it is less expensive online. You do get quantity discounts online. Go to enjoylifefoods.com and see what online suppliers ship there stuff. One of them is out of Toronto I think. Then you could check them out and see what products and brands they sell. You can still buy ice cream, you just need to get the plain ones. We buy breyers chocolate and vanilla. Tinkyada pasta is very good and you could make it for the whole family.

If you have time to bake you could get recipes from this site or order some cookbooks. Enjoy Life does make bread/bagels/bars/cookies and cereal. The cereal isn't that great and I haven't tried the bagels. There are a lot of products out there to help with the transition by giving us some of our favorite foods.

[Nevadan]

My $.02 worth:

Why the preoccupation with a "proper diagnosis"? If you feel better not eating gluten, why is that not sufficient? If you are tested with negative results, are you going to continue eating things that make you feel bad? Besides, going the conventional medical dx route insures that your medical record will show that you have celiac disease or gluten sensitivities, and wait until you see what that does to your health insurance rates (if you can even get insurance) should you ever find yourself paying your own insurance.

As you see, I think testing is way over-rated.

[Laurasc]

It will get easier as time goes by...but you will have those times you get depressed or down about not being able to eat just any ol thing. Do you have tinkyada pasta? If you can't find anything nearby, there are choices to order online to get gluten free stuff. It all depends on what your looking for. If you knew what you wanted I would even be willing to go to the gluten free store 1/2 hour south of us and pick up stuff for you and ship it UPS or USPS Parcel Economy. I would have to compare prices and see if it is less expensive online. You do get quantity discounts online. Go to enjoylifefoods.com and see what online suppliers ship there stuff. One of them is out of Toronto I think. Then you could check them out and see what products and brands they sell. You can still buy ice cream, you just need to get the plain ones. We buy breyers chocolate and vanilla. Tinkyada pasta is very good and you could make it for the whole family.

If you have time to bake you could get recipes from this site or order some cookbooks. Enjoy Life does make bread/bagels/bars/cookies and cereal. The cereal isn't that great and I haven't tried the bagels. There are a lot of products out there to help with the transition by giving us some of our favorite foods.

I guess it's all a matter of mindset. There are a lot of foods that I love that I won't be able to have...but it's a small price to pay I guess for feeling good.

Thank you for the offer to pick up some stuff for me. I did a search and actually found a place that is based out of Laval, which is just north of Montreal. It's called Open Original Shared Link and they seem to have a wide variety of foods....even bagels.

My $.02 worth:

Why the preoccupation with a "proper diagnosis"? If you feel better not eating gluten, why is that not sufficient? If you are tested with negative results, are you going to continue eating things that make you feel bad? Besides, going the conventional medical dx route insures that your medical record will show that you have celiac disease or gluten sensitivities, and wait until you see what that does to your health insurance rates (if you can even get insurance) should you ever find yourself paying your own insurance.

As you see, I think testing is way over-rated.

You do have a point here...but unfortunately it's the nurse in me coming out. I'm probably going to have the same battle getting myself evaluated and diangosed as I did when I strongly suspected I was hypothyroid. But I need to know...is it Celiac? Is it simply a gluten allergy or intolerance? Is it something else? Is it AIMH (all in my head) although I think that's highly unlikely.

Regarding health insurance, I'm in Canada and we have medicare...it's covered already regardless of what our various diagnosis are.

Off on a tangent here...I do have to say one thing about this board...I've been to many, many forums all over the net and have encountered very few where the people are really helpful and friendly...especially to newbies. This board ranks among the best of them.

Bravo!!

Laura

[kbtoyssni]

Finding gluten-free food in a regular grocery store gets easier, too. At first I'd read labels and think "not sure about this one, have to call the company to verify" which is really overwhelming. After a while you just know what the safe brands are and shopping becomes much less stressful.

[n D nile]

Laura,

From your first post, I can see that we have a lot in common. I am also 43 and also have the thyroid issues, Hasimoto's. I have been having many health issues lately, constant bladder infections, I've always had sinus infections every several months since I was about 25, and IBS, which just means they don't know what's wrong with your bowels, but something clearly is. Everything just seemed to crash down around me the last year, and since my boys both have Celiac disease, they convinced me to try it. Why I didn't consider it long ago, I don't know, as my name says, I've been in denial. I miss eating everything so much, but with the migraines and sort of depressed feeling I have when I have challenged it, I am staying gluten free. If you plan on getting off of gluten, and you truly have celiac disease, I don't think you'll want to go back. One wonderful side effect I have noticed is that I get up in the morning easily. For my whole life, I had difficulty arising from bed and felt fuzzy for hours afterward. Now I just pop up out of bed and feel alive straight off. I've always been ashamed of my self for not being able to get up when I should and truthfully getting up was painful, hard to describe. If this was my one and only benefit, it would be worth it. I'm almost four months into this with at least 3-4 challenges. It is a lot more slow going than I imaginged and also, eating gluten sets me back a lot farther than I would have thought. I don't feel right again for several weeks. I also wonder if the infections will go away, so far I have not had any. Has anyone tried making cupcakes with coconut flour? OH M G__!, they are to die for. The flour is not available at any stores that I have been able to find, but I ordered it from Bob's Red Mill. The recipe is in Cooking With Coconut Flour by Bruce Fife on page 102. The flour is also very expensive, but worth it to me. With icing, you would swear you are eating wheat and it is the only thing that has got me through this.