Self-diagnosis

[welshy]

I'm pretty sure i'm intolerant to gluten and dairy as a couple of years ago i went gluten and mostly dairy free for a year and all my IBS (constipation and bloating pre-dominant) symptoms cleared up and i had regular menstrual cycles for the first time in 5 years! Since then i haven't been able to stick to this diet as i go in and out of believing that i have these intolerances as i've never been formally tested as my doctor won't. However, ultimately i'm certain that i'm gluten and dairy intolerant (and potentially soy intolerant) but i found the diet so limiting and lost almost a stone in weight. Whilst the weight loss was nice i'd didn't feel that it was naturally me. Plus, i hate being awkward when i'm eating out or over a friend's house and feel guilty about subjecting my husband to my dietary limitations. Consequently a week hasn't gone by when i don't suffer with IBS like sypmtoms, depression, anxiety and fatigue. Yet i can't seem to return to this diet because i'm afraid of it being so limiting and losing weight again. Plus i can't seem to muster up the will power. Can anyone else relate to this? Am i being ridiculous? I suppose ultimately my health is the most important thing and my husband and i want to start a family this year so i'm desperate to get my symptoms under control before then. I'm glad i've found this forum and hope that someone can offer advice and reassurance. Thanks

[par18]

Note quite sure what it is you are looking for in terms of support. If in fact you do have undiagnosed Celiac/gluten intolerance then the only way your symptoms will subside is that you start and "stay" gluten free from now on. That said if it is mainly a question of willpower and the only way you feel you would be compliant (and your husband supportive) is with a doctor's diagnosis then I guess you should continue to eat gluten and maybe you will be able to obtain one. The one thing I would not advise is to repeatedly start and stop eating gluten while you are trying to get diagnosed. This will only confuse anyone trying to determine what is wrong. If the only way you get relief is when you eliminate gluten (and dairy) from your diet then what does that tell you? Concerning yourself with the social implications of the diet at this point should be the least of your worries. As far as the husband aspect is concerned has he indicated that he would not support you if you had to adopt this diet. The most important thing should be to figure out what is wrong and then address those other issues later. I can appreciate how inconvenient this lifestyle is as I have been doing it for almost 3 years now. I do however appreciate the fact that my "IBS" symptoms are gone and have not returned since going gluten free. That alone for me makes this lifestyle "worth it". Thousands if not millions of people do this every day so you will not be alone. So far you have already succeeded in finding this website and asking for help. Also this website is open worldwide 24/7 so there is a good chance someone is always online to answer questions or offer advice. As far as losing or gaining weight I was only able to gain weight "after" going gluten free and having my gut heal to the point I was absorbing again. Hope this helps and good luck.

Tom

[welshy]

Thanks for your reply Tom. Not really sure what i'm looking for either! I suppose i was just introducing myself and explaining my struggles with what i'm certain is a gluten and dairy intolerance. I think i've finally got to the point where i don't feel a doctor's diagnosis is necessary. My husband is supportive and agrees that the diet is the way forward so i guess the only think i need to do is accept that is going to have to be a way of life for me and get on with it. This is the hardest part for me i think. I desperately want to feel well again and energised so i have to remind myself of this in order to stick to the diet. As ridiculous as it sounds, the real thing i struggle with in terms of the diet is what to eat for a packed lunch in work! Breakfast and dinner aren't a problem because they're always gluten and dairy free, it's just what to take into work for lunch?

[missy'smom]

For some inspiration, check out this site and her list of links.

Open Original Shared Link

This is how I pack a lunch for my son everyday(6 days a week) and how I pack food for myself in various situations. The recipes and foods on these sites are not all gluten-free but you can take away the concept and adapt some recipies to gluten-free. I spend only 10 min. tops in the morning preparing it. OK, rice takes longer than 10 min. but it can cook unattended. I keep a stash of homemade convenience foods, like meatballs, in individual portions in the freezer and warm up or deep fry in the am., add some rice or pasta freshly cooked in the am and fruit and fresh or frozen veg. and we're go to go.

[cinnamonroll]

Also, if you still want a diagnosis but don't want to go back on gluten, since it seems like you are feeling better, something I read about on these forums is enterolab (Open Original Shared Link), they can do a stool test, which they say is more sensitive than a blood test, and you can be off gluten for up to a year I believe and still get accurate results. I want to get this, even though I am pretty sure, the scientist in me needs proof to back it up. I'm just waiting to get a job that pays more because I"m pretty sure my insurance won't cover it.

[glutenfreemeg]

Hi Welshy,

I registered today just so I could reply to your post, because I feel like I'm in the same boat and wanted someone to commiserate with! I'm sort of self-diagnosed as well, I've been gluten-free for 5 weeks now and I feel so much better. But since I don't have an actual diagnosis from my Dr, once in awhile I question my decision to eat gluten free and I think I'm just being obsessive about it. I really do feel better, but there's been a handful of days in these last 5 weeks where I have a bit of my symptoms back, and sometimes I don't know if I accidently ingested gluten, or if my symptoms are related to something else. I haven't been cheating, but sometimes I feel kind of silly being so strict about this diet when I don't really know for sure that gluten is my problem. (Okay, I'm pretty darn sure that gluten is my problem, I just would feel more confident if a scientific test told me that.)

This whole gluten free journey has been a bit of a mental journey for me as well. I'm just trying to make the decision to stick with this for long run. Sometimes I think I should eat a huge pile of whole wheat bread to test myself, but in my head I already know that would knock me out on the couch with a bloated stomach and painful gas cramps, so why do it.

So, while I don't have any great ideas for you, just wanted to let you know that I don't think you're ridiculous! I feel the same way and I question myself all the time. But really, in the end it's all about the results, and since my results have been mostly good, I'm sticking with this for now. Feel free to share any other frustrations! I totally understand!

Megan

[Glutina]

Hi! My story is similar...I am posting a thread about it in fact right after this...but just a quick recap: I am basically a self-disgnosis as well, with the encouragement of my doctor (explains in my thread) because my blood test came back negative...but between the time that I had an ultrasoudn and the follow up appointment, I went gluten free and feel so much better! I understand the whole thought process of "wow...this is a lot of work for a self-diagnosis"...but really, you are the only one who TRULY knows what feels right and helps your symptoms. Trust your body!

-Glutina:)

[wowzer]

Hi, It sounds to me like you know you are celiac. I had a negative blood test, but still went gluten free because I had so many symptoms. My symptoms leaned more toward DH. When I look back before going gluten free, I was avoiding a lot of it anyway. Probably why my test was negative. For me over the years I had many unexplained very itchy rashes diagnosed as many different things. All I know is that I don't want to itch like that again, so it is gluten free for me. Even my family doctor saw improvement in me after a few weeks, so he said stay on the diet. Now I try to avoid gluten, but somehow it seems to find me. Hersheys/Cadbury candy being the latest. Grrrrr. To me seeing the positive results are well worth the hassles. Good Luck

[welshy]

Hi Megan,

Many thanks for your reply- it's so good to know that there's someone else in the same boat. At the mo i'm working up to a completely gluten free diet - not quite there yet as i'm eating oats. I suspect that as soon as i've cut them out i'll feel much better. I'm also barely eating dairy- just have milk in my tea/coffee. I keep going back and for because i don't trust my own self-diagnosis even though i know it's right. I've actually tested my diagnosis and eaten a sandwich and the cramps, bloating, exhaustion and constipation as a result so aren't worth it. This has definitely confirmed to me that gluten free is the way to go (i still get cramps and bloating from oats but nowhere near as bad). So i definitely share what a mental journey it is with you! I too would feel more confident with a doctor's diagnosis but I don't think i'll get an accurate one, even if i could persuade him to give me the test - which is a massive task in itself. Therefore, i have resolved to be strong-minded and just go completely gluten-free- you're so right, the results do speak for themselves we just need to be confident with that. The mind - body battle is a tough one!

Thanks Megan, it's great to know i'm not alone.

Sarah

[welshy]

Dear all,

Thank you so much for your replies. They were really encouraging and i feel more able to continue on my gluten free journey. Thanks again

[glutenfreemeg]

No Problem! You could always try gluten-free oats, I love my oatmeal so I bought a bag of those.

[Nancym]

Here's how I look at it.

There's the trade-off of your long-term health versus your habits and convenience. Eventually you could be looking at diabetes, lymphoma, colon cancer, liver failure, memory and brain issues and many autoimmune diseases. Basically an unhappy, severely compromised physical state for the rest of your life. Thinking long term, you might be on a colostomy bag, needing to use a walker, having to test your blood sugars all day long, be on the waiting list for an organ donation, in and out of hospitals and doctor offices, in dreadful physical pain from autoimmune arthritis and having to suppress your immune system with drugs (to the point you could die from a common cold) not to forget being constantly tormented by the symptoms of IBS. These are all some of the awful things that strike gluten intolerant people.

Maybe if you think on that awhile you'll find the strength to change your eating habits permanently. If not, go hang out in a nursing home for awhile and you can probably find a lot of people there suffering the end results of a poor diet. So many people don't know why they're ill and they suffer in ignorance, but you know why you suffer. You could change your destiny.

When I look at gluten food I say to my "poison". It works.

[Phyllis28]

I pack my lunch for work 5 days a week. For me, leftovers are the key to eating lunch. I make extra when I cook and package them into single portion meals. I reheat them in the microwave at work.

Also, I use a large softsided lunchbox or softsided can cooler for lunch. I put in BlueIce Mats to keep everything cold. That way I have everything at my desk and don't have to use the shared refrigerator.

I choose to stay gluten free to feel well and maintain my longterm health. I don't like being sick and gluten makes me sick.

[welshy]

Here's how I look at it.

There's the trade-off of your long-term health versus your habits and convenience. Eventually you could be looking at diabetes, lymphoma, colon cancer, liver failure, memory and brain issues and many autoimmune diseases. Basically an unhappy, severely compromised physical state for the rest of your life. Thinking long term, you might be on a colostomy bag, needing to use a walker, having to test your blood sugars all day long, be on the waiting list for an organ donation, in and out of hospitals and doctor offices, in dreadful physical pain from autoimmune arthritis and having to suppress your immune system with drugs (to the point you could die from a common cold) not to forget being constantly tormented by the symptoms of IBS. These are all some of the awful things that strike gluten intolerant people.

Maybe if you think on that awhile you'll find the strength to change your eating habits permanently. If not, go hang out in a nursing home for awhile and you can probably find a lot of people there suffering the end results of a poor diet. So many people don't know why they're ill and they suffer in ignorance, but you know why you suffer. You could change your destiny.

When I look at gluten food I say to my "poison". It works.

That's actually a really helpful way of looking at it. I'm so going to tell myself that it's poison everytime i eat gluten. To be honest, over the last few weeks whilst eating some gluten (but not wheat) i'm just been feeling sicker and sicker and getting more and more exhausted. So am now thoroughly fed up with this state and can't wait to see results from going gluten free (which i know will work because in the past when i was gluten free for a year i've never felt so well!). Can't wait

[MJK]

I'm pretty sure i'm intolerant to gluten and dairy as a couple of years ago i went gluten and mostly dairy free for a year and all my IBS (constipation and bloating pre-dominant) symptoms cleared up and i had regular menstrual cycles for the first time in 5 years! Since then i haven't been able to stick to this diet as i go in and out of believing that i have these intolerances as i've never been formally tested as my doctor won't. However, ultimately i'm certain that i'm gluten and dairy intolerant (and potentially soy intolerant) but i found the diet so limiting and lost almost a stone in weight. Whilst the weight loss was nice i'd didn't feel that it was naturally me. Plus, i hate being awkward when i'm eating out or over a friend's house and feel guilty about subjecting my husband to my dietary limitations. Consequently a week hasn't gone by when i don't suffer with IBS like sypmtoms, depression, anxiety and fatigue. Yet i can't seem to return to this diet because i'm afraid of it being so limiting and losing weight again. Plus i can't seem to muster up the will power. Can anyone else relate to this? Am i being ridiculous? I suppose ultimately my health is the most important thing and my husband and i want to start a family this year so i'm desperate to get my symptoms under control before then. I'm glad i've found this forum and hope that someone can offer advice and reassurance. Thanks

Hi

I found out by accident really that i was gluten intolerant. I went on a low carb diet to lose weight and realized in about a week that my sugar was not going low...I had no bloating and my years of awful gas was gone..... my migranes gone and many more things. I went back on bread and all the other stuff and wham right back to what i was. I went to the doctor and asked for tests and he said he does not believe in testing that i know I need to be off them and that is end of story. I too went off the diet cause i thought why do it with out a diagnosis when the extra money could go to my kids. I have one boy with chronic constipation and one boy with severe eczema...so now i want them tested and again...does not believe in it. I am now on a gluten free diet for 6 weeks...i feel great...I will not come off it again.

Mk