Several Doc Visits And Need Help!

[nuttmegs17]

Hi

i have had severe stomach pains for the last 3 years...my symptons are

1. gas and extreme bloating (to the point where - no exaggeration - I GO UP at least a size within the hour and have taken to only wearing skirts as I never know when i'm going to have an "Attack"..When it's really bad, my stomach is out far enough to mistake being pregnant!)

2. constipation

3. distended bowels

4. painful stomach (due to gass/bloating)

5. weight stagnation (havn't gained a lot of weight but am someone who generally drops weight super easy when busy and despite working out and being active my weight is no longer fluctuating)...my face also looks fuller

6. Swelling in my body - breasts, arms around shoulders and back

7. can pin down when my attacks(Extreme bloating/swelling) occur...sometimes all I will have eaten is an apple and I swell up, other times its a glass of milk or often times I have a glass of water! But I hear allergies can sometimes show up a day later or several hours later so perhaps that is why?

I suspected food allergies and/or autoimmune problems (I've had graves disease in the past).

I have been to my main doc several times - she has run CT scans and Ultrasounds to no avail (think she was trying to rule out things). I kept food diaries and cut back on gluton. The only time I got any relief was when I would do a juice fast for 3 days. Seemed to get me running again and I experienced little pain. However, that is expensive and not a sustainable way to live (at least for me) whenever I would go back to normal all the symptons would return and it has definitely interferred with my life: having to call into work, canceling plans with friends, dates, etc Both my doc and i are frustarted. At this point it is outside her area of expertise so she referred me to what is supposed to be a very good GI doc. I have waited a while to see him: made my appt in Jan and will finally see him at the end of March (!)....b/c I am waiting so long to see him, I really want to make the most of the appt bc who knows when he will have an opening again!. Any advice? My main worry is being blown off (As i have been in the past). I really want to make this visit count.

To take matters in my own hand in the meantime I have elimated dairy, soy (although I have noticed it still sneaks in) and wheat....Since making these drastic cuts even my boyfriend has noticed improvements. I still get gassy and bloated but not nearly to the extend it was before - not debilitating, only annoying from time to time. However cutting all these food groups out is more than challenging. I sincerely hope they can help me determine what my allergies are (hopefully not all of the above!).

ugh. this is very frustrating and I suspect this will take a while to sort out. I hear that for instance, if my allergy is lactose, that it can be hard to determine what amounts/types I have issues with (ie, some people tolerate yogurts and cooked cheeses but cannot process cheese or plain milk, some can tolerate a half a cup of milk every other day but a whole cup every day would result in lot of issues!) luckily i eat very clean whole foods mostly anyways, but it's made it a pain when I go out with friends or eat at someones house.

So to sum up

Does this sound familiar to anyone?

Suggestions to make the most of my GI visit

Thank you for your time!

[ravenwoodglass]

The main thing I am going to tell you is to not stop eating gluten before your appointment or your testing will come back negative for sure. Add wheat back in to your diet if you have cut it out. Hopefully since you haven't been fully gluten free if you add it back in the tests will show an accurate result. Once you are done with all celiac related testing do give the diet a strict try for at least a couple of months even if you tests are negative. Your in the right place to learn how to follow the lifestyle strictly. Welcome to the board and I hope you are feeling better soon.

[MsCurious]

Ditto what Raven said. DON'T stop eating gluten until you have been tested. Painful as it is... keep lots of it in your diet until the blood tests and/or biopsy are done, or your test results will possibly be a false negative. You have a LOT of the same symptoms that I have, and I know how uncomfortable/painful and NOT FUN it is to keep eating things that you suspect are making you ill, but it will soon be over. Once the tests are done you can stop eating gluten.

I have a few more days to go, and then hopefully I am off the hook, and I can't wait! In the mean time... I'm putting up with the headaches, fatigue, tummy aches, bloating, gas and all the fun digestive issues but it will be worth it to have an answer. They suspect food allergies with me as well, so I have tests in progress as we speak. Hopefully, results tomorrow. Have they done any of those for you?

I have a ton of allergies that run in my family, and I have the genetic DQ2.5 marker for Celiac, so I really have no idea at this point exactly what is causing the issues. So they are testing for both. I read yesterday that the two highest risk factors for celiac are 1. if a first degree family member has it (diagnosed) 2. if you have DQ2.5 marker, then it goes on from there, but who knows. They are still doing research and finding new information all the time.

I think like people say on here.. get tested. If positive ... GREAT .. you know what to do.. gluten free diet. If negative... give gluten free diet a good try and if you feel better... that's your answer... you're gluten intolerant. If that doesn't seem to do the trick for you... you probably have other food intolerances or allergies that you need to track down. Like my husband says, its like opening up a big puzzle box of 2000 pieces of a picture of the ocean ! LOL Not an easy task, but just keep at it and dont' get discouraged. This forum is a great source of support, suggestions and resources. Good luck! And hope you feel better really soon!

[nuttmegs17]

Ditto what Raven said. DON'T stop eating gluten until you have been tested. Painful as it is... keep lots of it in your diet until the blood tests and/or biopsy are done, or your test results will possibly be a false negative. You have a LOT of the same symptoms that I have, and I know how uncomfortable/painful and NOT FUN it is to keep eating things that you suspect are making you ill, but it will soon be over. Once the tests are done you can stop eating gluten.

I have a few more days to go, and then hopefully I am off the hook, and I can't wait! In the mean time... I'm putting up with the headaches, fatigue, tummy aches, bloating, gas and all the fun digestive issues but it will be worth it to have an answer. They suspect food allergies with me as well, so I have tests in progress as we speak. Hopefully, results tomorrow. Have they done any of those for you?

I have a ton of allergies that run in my family, and I have the genetic DQ2.5 marker for Celiac, so I really have no idea at this point exactly what is causing the issues. So they are testing for both. I read yesterday that the two highest risk factors for celiac are 1. if a first degree family member has it (diagnosed) 2. if you have DQ2.5 marker, then it goes on from there, but who knows. They are still doing research and finding new information all the time.

I think like people say on here.. get tested. If positive ... GREAT .. you know what to do.. gluten free diet. If negative... give gluten free diet a good try and if you feel better... that's your answer... you're gluten intolerant. If that doesn't seem to do the trick for you... you probably have other food intolerances or allergies that you need to track down. Like my husband says, its like opening up a big puzzle box of 2000 pieces of a picture of the ocean ! LOL Not an easy task, but just keep at it and dont' get discouraged. This forum is a great source of support, suggestions and resources. Good luck! And hope you feel better really soon!

WOw that is interesting that you both said that...I mentioned the same concern to my current doc, and in fact before I went gluten-free and begged her for the blood test b/c of the exact reason you outlined above (neg test results)...I figured I could have the test, and then follow a gluten-free diet before I say him . However, she told me to elimintate it for the time being and if I feel better, that helps with the diagnosis. eek. Soooo confusing.

I just don't get the swelling part of all this (Arms back breasts) after eating so strange (and uncomfortable)

Are there any specific tests (for allergies) I might want to ask for?

[nuttmegs17]

Oh and one other question

When you say to add gluten back into my diet prior to seeing the doc, how much gluten are we talking about? A serving every day? A serving every meal?

[ravenwoodglass]

Oh and one other question

When you say to add gluten back into my diet prior to seeing the doc, how much gluten are we talking about? A serving every day? A serving every meal?

At least 3 servings a day or the equivalent of 4 slices of bread. While feeling better on the diet is pretty diagnostic in itself if you are going to try to get a diagnosis based on the endoscopy then you have to keep eating gluten. If you are able to stict strictly with the diet without the biopsy then skip the biopsy and just go with the diet. As to allergy testing being helpful with a celiac diagnosis, no it won't be. Celiac is not an allergic reaction it is an autoimmune reaction and will not show up in allergy testing. Some of us are allergic and celiac both though.

[Takala]

I will puff up sometimes after eating a commercially made gluten free product. Only it's more generalized, and it includes my ankles.

Nobody can give me an explanation. I know what an allergy feels like, and this doesn't feel like anything. It's not gluten, either, I can tell when that happens as I go neuro reactive. I'm not sure if it is xanthan gum, guar gum, tapioca, or mystery ingredient yet to be determined. It is so annoying.

I did get really suspicious about some powdered garlic which was sourced from China, but .... what about the other times this has happened.

I've even eaten a complex gluten free meal out at a restaurant, and it DOESN'T happen.

Don't laugh, but this is playing **** with how my ski boots fit, and I've learned to be super careful the night and morning before going anywhere, with what I eat, anticipating trying to get that one boot fastened, as I tend to be a bit bigger and stronger on my entire one side of my body, longer leg, bigger foot, etc., and it's the larger side that the puffiness shows up more. Because of my age, my already sturdy legs are getting the dreaded cankles effect.

Before I went gluten free, (coming up 8 years) I had so many wierdo symptoms that this would not have been unusual, but this has started post gluten free.

Alas, to get a chance of a positive blood test result you will have to keep snarfing down the gluten until the blood is drawn for the test. After you have completed all medical testing to the best of your ability, if they still blow you off, you would be well to seriously do your gluten free diet challenge anyway. You will know, if you stop eating it and go gluten free, and feel better, that it is a problem for you. (you can also do over the counter genetic testing to see if you carry the genes pre disposing you to gluten sensitivity or celiac, which puts you in the class of "could be." )

Don't worry about the lactose testing. This is simple. STOP eating it for awhile. Highly likely if you are an adult, anyway, that you are lactose intolerant, once you are past your early twenties. Being celiac or gluten intolerant, increases your chances. Going on a gluten free diet, and having your gut heal, makes it more likely you will be able to tolerate non lactose dairy again. Add back in the safest, lowest levels of potentially lactose containing foods to re test yourself. Add back in only one thing at a time, and small amounts. Hard, aged cheese has very little lactose. Eating a small amount of that for a few days should let you know. If that works, you can try a safe yogurt. Yogurt is much more tricky, as it can have fillers and gums and powdered milk added to it as thickeners, and not really be lactose free. You can use homemade yogurt or one of the plain, safer, high quality brands. I can eat cheese, but have to be careful with yogurts.

It's unlikely that you will be able to tolerate regular milk.

Soy is another common ingredient that celiacs and gluten intolerant people react to. Soy oil and lecithin might not make you react the same as soy beans or soy flours, or soy sauce or tofu. Or it may be a low level, hard to pin down, sort of bleah feeling, not easy to pinpoint.

You can also be allergic to other things, as well. BUT- in my case, most of my allergies went way down once gluten was removed.

[Mari]

The gas is being produced by bacteria and yeasts in your gut. When people have an unbalanced mixture of organisms in their intestine it is common for people to have lots of gas, especially if they eat too many carbohydrates, sugars and other foods these organisms thrive on. The gastroenterologist will do the tests necessary to find the underlying causes and may do some tests to identify which organisms are out of balance. Although you have had some tests done they might have missed gallstones or insufficient bile production that may also include pancreatic enzyme deficiency. These gas forming organisms thrive better when the food eaten is not being well digested. I have found that taking a balanced Vit B supplement is helpful, especially Vit B12. The Dr may also order parasite tests but they are not very helpful, a better test is like the Enteric Effects Panel offered by (Company Name Removed - They Spammed This Forum and are Banned) Labs. This test also looks for anti gliadin antibodies and is more sensitive than the blood tests for possible Celiac Disease.

Hope this helps.

[nuttmegs17]

This is very helpful - thank you all!

I did a CAT scan and an gallstone was present - just one. So odd as they are linked to high cholesteral but I eat soooo healthy (whole foods, very little processed, fruits /veggies/lean meats are staples)

[nuttmegs17]

I posted another string similar to this, but lately have noticed via photos and scale that I am now GAINING weight and my face is fuller (not just temporarily swelling up in my arms shoulders back, just a constant bloated look). No I am not a drinker or smoker I live a very healthy/active lifestyle and am so worn out from all of this

[nuttmegs17]

another gluten challenge question:

I was on gluten and had all those horrible symtpons, then went gluten-free for 2-3 weeks, now I'm incorporating gluten again....will those 2-3 weeks be crucial? Will I need to go on the Challenge for a full 3 months? or will they not count against my gluten challenge that much as I have been eating gluten all my life previously?

[nuttmegs17]

another gluten challenge question:

I was on gluten and had all those horrible symtpons, then went gluten-free for 2-3 weeks, now I'm incorporating gluten again....will those 2-3 weeks be crucial? Will I need to go on the Challenge for a full 3 months? or will they not count against my gluten challenge that much as I have been eating gluten all my life previously?