New Around Here - Glad To Have Found You!

[DEKS7981]

Hi everyone,

Just wanted to say hi and say that I'm glad to see a forum of this sort exists. While I am not personally diagnosed (sorry...I hope this doesn't make me seem like an outsider!) I believe it is quite possible that I suffer from Celiac or some form of gluten intolerance. Ironically, it appears that my wife also suffers from something very similar.

We both suffer from a variety of symptoms, including terrible bloating, abdominal pain, constipation, bowel irregularity, irregular gas (sorry!), etc.

The odd thing is that my symptoms (I swear! Unless I am out of my mind) appear to follow a pattern. Certain days of the week (each week) I'll have the same symptoms, then other days I won't. It is strange. However, I am not aware of any dietary changes based on day of the week, so I have no explanation for this. It just seems like they follow some sort of a cycle.

Bottom line is that I have been reading over a number of posts on here, and have already learned quite a bit. First and foremost, my wife and I decided together that we are going to immediately begin a gluten-free diet once we can go and buy all the right foods this weekend. That is step 1. Next, we were thinking about going to the doctor to see if we can (or cannot) get diagnosed. However, it appears that many of you have had tests done and that results came back negative. Yet, and thankfully, you decided to go gluten-free and have seen serious (if not complete) improvement. This makes us both feel happy, to know that although a test may come back negative you can still see dramatic improvement if you go gluten-free.

Finally, both of us have our thoughts as to why (or how) this may have started. For my wife, she used to be healthy as anything, but a few years ago she had to undergo a series of internal abdominal surgeries (including the removal of a major portion of her intestine), and this appears to be when things started for her. For me, I don't know exactly when it started, but I do know a couple things: first, I was diagnosed with Lymes disease a few years ago. I noticed someone on here said they were also diagnosed and that can sometimes have an effect on certain things in your body (they mentinoed auto-immune). I also know that people have been telling me lately (honestly, quite a few people in the last 6 months or so) that I have lost weight. I truthfully did not notice this myself, but everyone is saying it. I have seen that weight loss (unexplained) can be a symptom. I kept thinking... I have been eating the same, and exercising the same, so what is causing this. I just figured it was something natural happening in my body (just turned 30...old age? )

So, anyhow, long story short my wife and I have come to the realization that this sucks to deal with, and that a change has to be made. We learned about Celiac, thought our problems could be related, and we are going to go gluten-free to see if it makes a differnce. Fingers crossed, we sure hope so.

Best of luck to everyone else out there. It seems like a lot of people suffer from this, to varying degrees of severity. I wish everyone well and once again we are glad to know you are out there!

[mushroom]

Welcome to the celiac world, if that is where you are, and welcome to the forum.

If you have been reading here much, you will know that if you want a testing-derived diagnosis you should not go gluten-free until all testing has been completed. If you are happy with a self-diagnosis (which many of us are) then you can start the diet right away. But all tests to confirm the diagnosis require that you continue to eat gluten up until the time of the test. And once you have gone gluten free, eating gluten becomes much more painful, to the point that most of us would not consider doing it just to get tested.

At any rate, any questions you have about gluten-free living, just fire away.

[DEKS7981]

Hi mushroom,

Thanks for the welcome and thanks for the heads up regarding testing. That makes sense, and when I read that I remembered reading something about consuming normal gluten up until you get tested. Thanks for the reminder.

Not to be totally nosey, but I see you have your stats in your footer. From reading it, it appears you have stopped consuming a wide variety of foods. Were those all by choice? If so, why? Or are you intolerant of all those things, similar to gluten? And, if those have been eliminated from your diet, what does your normal diet look like? For me, removing potato, soy, gluten, lactose, legumes, etc, seems like a lot! I'm sure there is still plenty left to enjoy, though.

Thanks for the help. I look forward to learning a lot more on here!

Welcome to the celiac world, if that is where you are, and welcome to the forum.

If you have been reading here much, you will know that if you want a testing-derived diagnosis you should not go gluten-free until all testing has been completed. If you are happy with a self-diagnosis (which many of us are) then you can start the diet right away. But all tests to confirm the diagnosis require that you continue to eat gluten up until the time of the test. And once you have gone gluten free, eating gluten becomes much more painful, to the point that most of us would not consider doing it just to get tested.

At any rate, any questions you have about gluten-free living, just fire away.

[kareng]

People I know who have had parts of the colon or small intestine removed for various reasons, were told by the GI doc's what to eat or not eat. I know they were told to go gluten free or light ( gluten-free bread or pasta but don't worry about a cookie or wheat in the soy sauce. This is because wheat is hard to digest.

[DEKS7981]

Ok, thanks. That makes sense, too. I can see how removing 'big ticket' gluten items such as pasta and bread could make a big difference. Gluten-light seems like it still allows a person to enjoy some of their 'guilty pleasure' foods like crackers & cookies

Good recommendation, thanks.

People I know who have had parts of the colon or small intestine removed for various reasons, were told by the GI doc's what to eat or not eat. I know they were told to go gluten free or light ( gluten-free bread or pasta but don't worry about a cookie or wheat in the soy sauce. This is because wheat is hard to digest.

[mushroom]

Hi mushroom,

Thanks for the welcome and thanks for the heads up regarding testing. That makes sense, and I read that I remembered reading something about consuming normal gluten up until you get tested. Thanks for the reminder.

Not to be totally nosey, but I see you have your stats in your footer. From reading it, it appears you have stopped consuming a wide variety of foods. Were those all by choice? If so, why? Or are you intolerant of all those things, similar to gluten? And, if those have all been eliminated from your diet, what does your normal diet look like? Blame ignorance, but if all those things have been eliminated, what is left?

Thanks for the help. I look forward to learning a lot more on here!

Okay, I did say to ask, so here goes. Don't feel sorry for me - there are still oodles of delicious foods out there that I can eat. I have just finished a dinner of pan-seared scallops and steamed asparagus - didn't feel the need for anything else. I am totally sated

The reason for the elimination of so many foods is an intolerance of most high-lectin foods. The gliadin in gluten is a lectin. There are also lectins in high numbers in corn, soy, in fact all legumes, in nightshades and citrus. Some of these intolerances are undoubtedly genetic (Northern European) and some are acquired. I have recently consulted a nutritionist because I seem to be adding intolerances, and she has put me on a supplement program (despite all the supplements I have already taken) designed to specifically restore my health problems, including my apparently still leaky gut which continues to let foods into my blood stream which should not enter at the level and in the size that they do. This creates more autoimmune antibodies and leads to further intolerance. But I am an extreme case and do not think that you will go through what I have. Most people eliminate gluten, lactose initially (because of the damage to the villi) and occasionally find another food or two that they do not tolerate well. I was very late (self) diagnosed and had had numerous indicative problems which no one picked up (diagnosed as IBS, fibromyalgia, psychiatric illness ) and other things of total irrelevance to the actual disorder.

As for my normal diet, I usually start the day with a yogurt smoothie with berries, ground flaxseed, hemp protein powder, and a banana. The yogurt is important for me - necessary, in fact, or else I am in for a bad day. I am now (on the advice of the nutritionist) making the 24-hour SCD (Specific Carbohydrate Diet) yogurt, as well as taking a probiotic, VSL#3 which has over 250 billion organisms of 7 different strains of favorable bacteria to repopulate my gut.

Lunch can be a tuna salad, or an omelette with avocado and parmesan cheese, a grilled cheese sandwich with a salad, leftover dinner, a lettuce roll with turkey, cheese, shaved carrot and zucchini, a mixed salad with left-over veggies, hard-boiled egg and cheese of some kind, whatever is on hand that I can eat.

And dinner is normally a simply pan-prepared meat or fish with steamed veggies and either rice or gluten-free pasta (or no starch, like tonight).

The nutritionist has told me that after a year I may be able to add back in some of the foods, like maybe some nightshades and legumes, hopefully citrus, but I was intolerant of corn and soy long ago, so don't expect to ever eat them again.

So again, as one door closes you open another. Scallops are my favorite food (my husband hates them) so we are getting to the point where we share veggies and starch and cook different proteins (he is celiac also, has DH). He does not have my lectin problem so we do different lunches always, and often different breakfasts - he loves Mexican food which is a no-go zone for me, in fact it was in eating Mexican food when I first went to California that I discovered that I had food intolerances - but didn't know how extensive at that time

So it is not being nosey to ask, we are happy to share our experiences because you never know when it may help another person who thinks they are totally unique

[kareng]

Ok, thanks. That makes sense, too. I can see how removing 'big ticket' gluten items such as pasta and bread could make a big difference. Gluten-light seems like it still allows a person to enjoy some of their 'guilty pleasure' foods like crackers & cookies

Good recommendation, thanks.

Gluten- light isn't for people with Celiac. Just want to make that clear.