Is It The "g Word?"

[Starving Amy]

I've had stomach issue for almost half of my life. I remember it kind of starting in 98ish (When I was 18) when I thought black pepper would upset my stomach. As it turned out, black pepper wasn't a problem. As I remember - I didn't run into a lot of discomfort till about 2006. I'd have mild reactions here and there to food of unknown origin from 95ish (15 yrs) till 2006 (26 yrs) but things really started to go downhill with traveling as an added stress to my life after 2006. 

 

I started going overseas, one to three times a year and then traveling around the country at least three times a year, which would/still constipates me something hellaciously. In the beginning  I would look forward to a trip to Singapore, Australia, New Zealand … anywhere - but I would be really scared about how I was going to be able to poop. Now all I do is just worry. If I don't poop, at least once a day - I can't eat because I feel too sick.

 

At first I managed fair, or at least put up with it. As the years drug on I became less tolerant of the situation and began coming up with self-defense methods like traveling with kefir, miralax, and traveler's acidophilus. These things all helped, initially - but they barely do much for me now. I use episome salts and now, even self inflicted enemas - as the very very last resort. And I know it's the last straw now that I am trying fasting cleanses. They do help but  I've run out of solutions. 

 

My biggest confusion is I don't know if it's gotten worse or if I've just grown entirely sick of being sick. I feel like it's been really bad for at least a year though. 

 

My best friend died on August 11th, 2013 and after giving her my whole year, and watching her die of IBD related lymphoma, I worry about myself. I've read the science research suggesting IBS is essentially early stage lymphoma and it worries me. But beyond all that, I promise that before I leave this life - I will get a tattoo of my best friend on my left arm. There's just one catch - on top of tummy/intestinal issues I get boils on my shoulders and upper arms too. I think it's all related. 

 

Back in 2006 I'd get the boils on my face. I stopped eating and drinking cow products laden with rBST and rBGH and my boils stopped appearing on my face. I realize I was getting cystic acne on my face thanks to those steroids. My body was reacting to the steroids given to the cows the way roided sports players would get cystic acne. It made sense. So I haven't done rBST/rBGH since 2006 and have enjoyed the benefits. I had a scare in 2008 (28 yrs) thanks to the birth control, Yaz low - with breast cancer - so I stopped my birth control. About a year and half later I began having the same kind of scaring cysts appear on my back, shoulders and upper arms! My last experience pointed to hormonal imbalance but I am off rBST/BGH so what could it be?

 

For the last two-years I've begun thinking my cysts and stomach are tied together. 

 

Well since my friend's death I've kept a food journal with a worthless iPhone app that told me coffee was the culprit. Then it told me cucumbers and tomatoes. Fricken worthless wild goose chase. After three months of the bs I stopped using their waste of money app. I HAVE noticed though, that breads and pastas seem to kill me. 

 

My symptoms are:

Horrible cystic acne on my back, shoulders, and arms. Runs of terrible daily constipation followed by really mushy, unhealthy looking craps.  Irregular menstrual cycle. 

 

Those are the three terrible things I can point out. Since I've been on an elimination diet I noticed I get mild headaches and joint aches after eating certain foods - only with gluten. I wonder if this is a new set of symptoms or if I am just now more aware of my body since I am definitely paying more attention.

 

Since August I changed my diet completely. I prefer the raw/vegetarian/low glycemic diet. I am not a stickler if I am ruining everyone else's night, but that diet keeps me feeling the best. I can drink coffee and be fine, btw. I love raw lentils, red cabbage, annnnd oh!!!! I used to have an avocado allergy that would make my stomach swell for 12 hours… but since I've changed my diet I can eat avocado! 

 

All I have to go by is this - 

- IF I eat pasta/noodles, 80% of the time I will be constipated and feel toxic for 2 days afterwards. 

- IF I eat most bread, not sure what though, I will be constipated and feel toxic for 2 days afterwards. 

- While feeling toxic I cannot eat any rice, as it makes me WAY SICKER. 

- I can't tell if I am outright allergic to quinoa but I get really toxic after eating it. My intestines shut down. I'm not sure if it's only quinoa though or if it's quinoa AFTER I ate something else that makes me sick.

 

I have noted that gin and whiskey, two of my favorite things, may make me mildly sick. =( I have also been shocked to learn gluten is in some of my other favorite sauces, soups, brewer's yeast ect… it's in everything! D=

 

My bottom line is - I am starting to conclude I have a variation of gluten intolerance. I don't know if it's a recent onset - but I doubt it. I don't know if I am as bad as I have ever been, sure seems like it. Or if I am just now paying attention to how bad I am. I feel like I handle smaller amounts of gluten better than larger but I think maybe all of it may be terrible for me. 

 

I go in for blood work and consultation on February 6th. My suspicion is I have PCOS created via gluten intolerance. 

 

I need help understanding my situation, advice: good doctors, blood tests, test-tests, and someone to relate to.

[1desperateladysaved]

I am glad you are checking in to this.  I believe you should check for celiac disease.  You must be eating gluten for the blood tests to be valid.  After that whether the blood tests are positive or negative, you should try going 100% gluten free.

 

Since you are eating mostly plants, make sure you get enough protein. I felt the absolute worse when I drifted into less meat and more vegetables the summer before my diagnosis.  Your declaration of feeling healthier on such a plan is incredible to me.  I know people are different though, so it certainly could be!   Don't raw lentils bloat you?  I soak mine for 24 hours, discard the water,  and cook them until they are soft.

 

Celiac disease can cause constipation as I have seen on the forum.  Doctors don't think of celiac unless one is skinny and has diarrhea.  I hope you can find one that will listen to you.

 

In the mean time (Before testing) you could start taking a high quality, gluten free, multivitamin and vitamin B.  If you have celiac or if you are vegetarian very long you can get short on Vitamin B.

 

I wish you all the best on your quest for healing.

 

D

[cyclinglady]

Keep eating gluten until all testing is complete. Go to the University of Chicago's celiac website and print off the list showing the complete celiac blood panel and show it to your doctor. This site contains valuable information, so I encourage you to browse through it.

I hope you feel better soon!

[Starving Amy]

  >>>You must be eating gluten for the blood tests to be valid.  

 

 

I had just read that on another post! No one mentioned this to me at the clinic. I was also reading about the IBS Treatment Center's tests and they never mention it in their site. FEAR!!! Haha! Ugh. I get so sick eating some thing. And then it takes roughly 2-3 days to get back to what feels good and right. 

 

I read on here I have to eat gluten for 3 weeks before the tests? Even if I eat it once and feel tremendously sick after not eating it for 2 weeks? What if I just go in feeling like crap from eating it 3 days before? 

 

>>>Your declaration of feeling healthier on such a plan is incredible to me.  I know people are different though, so it certainly could be! Don't raw lentils bloat you?  I soak mine for 24 hours, discard the water,  and cook them until they are soft.

 

Well, I am a lucky lady being raised from a nutritionist mother. I've always made it a point to eat enough protein, everyday. 50Grams a day, to be exact. To do the veggie/raw diets you have to understand what your daily values need to be. Otherwise - you'll have an unsatisfying time. But I think protein is the main thing that leaves people feeling hungry. I get enough protein, usually from pintos that I have soaked for 2 days with lots of rinsing. Also from deep green plants, nuts, seeds, organic soy, multi-vits (non gluten-free :/ )... ect. 

 

I should have clarified "raw lentils." What I meant was sprouted lentils. I have also built my tolerance up to lentils so I do not get upset stomach from eating them. I used to but it didn't take a whole lot before I was fine with eating them. Now chick peas are a totally different story. I can't ever adjust to chick peas so I avoid them as much as possible. 

 

>>>Celiac disease can cause constipation as I have seen on the forum.  Doctors don't think of celiac unless one is skinny and has diarrhea.  I hope you can find one that will listen to you.

 

Yea I almost think my constipation could really be renamed, "intestinal shutdown." They just - stop working. Really infuriating. I am skinny, though. And I have a pattern after eating something crappy then I get gassy for a few hours, signifying nothing is passing through anymore. Then I get constipated. Once all systems start coming back on-line, I am dispensing diarrhea - to varying degrees. Unpredictable in that dept. 

 

 

Thank you for the compassion. I think that's really the whole point to this exercise. I feel kind of alone not knowing the full issue I'm facing. I get sick. I get crotchity. Life begins to seem laborious. I have an idea of what makes me sick though, which is a blessing but I have friends, who mean well, who keep sending me these stupid suggestions that things I CAN eat are making me sick. It's becoming all too common and obnoxious. All I can say is "thanks, but I don't think you really understand what I am dealing with. Lentils do't make me sick - thanks for the random medical article, anyway." >_<

 

I think the thing that's most confounding is how long has gluten been the end all be all potential issue? I know in 2006 I could eat buckwheat noodles and be OK afterwards. Some times, I guess they would effect me... but I'm not sure. I can't pinpoint this issue and it's bugging me. I have friends with true celiac and have thrown dinner parties for them always thankful I didn't have the issue... but maybe I had a latent issue? I am sure, gone untreated/unrecognized, gluten intolerance only can get worse. I'm trapped in an unpleasant mystery looking for a hand to hold.

[cyclinglady]

Other than my anemia (I have two: thalassemia and iron deficiency) and thyroiditis (dx in '97), I did not have any intestinal symptoms except when I ate allergy provoking foods (casein,whey, nuts....). What I am trying to say is that celiac disease produces up to 300 symptoms and that many struggle for years (like yourself) to get answers.

Read the university website. It is reliable and reputable. It will tell you how much gluten to consume and for how long. You can not just eat it for a day, get sick and than get tested a few weeks later. It takes time for antibodies to build in your system and then to get an accurate result. If a challenge is too much, go gluten-free. My husband did this 13 years ago at the request of my allergist and his GP (I was formally diagnosed in 3/13). He strictly complies with the diet (including cross contamination).

You are lucky that your recovery from gluten exposure is only 2 to 3 days. Many folks here take up to three weeks to recover. That's the craziness of celiac disease or gluten intolerance -- nothing is consistent.

Education and research by you is critical since many docs are just not gluten savvy. I think you have already experienced that.

I hope you find your answers! Do not give up!

[kareng]

>>>You must be eating gluten for the blood tests to be valid.  

 

 

I had just read that on another post! No one mentioned this to me at the clinic. I was also reading about the IBS Treatment Center's tests and they never mention it in their site. FEAR!!! Haha! Ugh. I get so sick eating some thing. And then it takes roughly 2-3 days to get back to what feels good and right. 

 

I read on here I have to eat gluten for 3 weeks before the tests? Even if I eat it once and feel tremendously sick after not eating it for 2 weeks? What if I just go in feeling like crap from eating it 3 days before? 

 

>>>Your declaration of feeling healthier on such a plan is incredible to me.  I know people are different though, so it certainly could be! Don't raw lentils bloat you?  I soak mine for 24 hours, discard the water,  and cook them until they are soft.

 

Well, I am a lucky lady being raised from a nutritionist mother. I've always made it a point to eat enough protein, everyday. 50Grams a day, to be exact. To do the veggie/raw diets you have to understand what your daily values need to be. Otherwise - you'll have an unsatisfying time. But I think protein is the main thing that leaves people feeling hungry. I get enough protein, usually from pintos that I have soaked for 2 days with lots of rinsing. Also from deep green plants, nuts, seeds, organic soy, multi-vits (non gluten-free :/ )... ect. 

 

I should have clarified "raw lentils." What I meant was sprouted lentils. I have also built my tolerance up to lentils so I do not get upset stomach from eating them. I used to but it didn't take a whole lot before I was fine with eating them. Now chick peas are a totally different story. I can't ever adjust to chick peas so I avoid them as much as possible. 

 

>>>Celiac disease can cause constipation as I have seen on the forum.  Doctors don't think of celiac unless one is skinny and has diarrhea.  I hope you can find one that will listen to you.

 

Yea I almost think my constipation could really be renamed, "intestinal shutdown." They just - stop working. Really infuriating. I am skinny, though. And I have a pattern after eating something crappy then I get gassy for a few hours, signifying nothing is passing through anymore. Then I get constipated. Once all systems start coming back on-line, I am dispensing diarrhea - to varying degrees. Unpredictable in that dept. 

 

 

Thank you for the compassion. I think that's really the whole point to this exercise. I feel kind of alone not knowing the full issue I'm facing. I get sick. I get crotchity. Life begins to seem laborious. I have an idea of what makes me sick though, which is a blessing but I have friends, who mean well, who keep sending me these stupid suggestions that things I CAN eat are making me sick. It's becoming all too common and obnoxious. All I can say is "thanks, but I don't think you really understand what I am dealing with. Lentils do't make me sick - thanks for the random medical article, anyway." >_<

 

I think the thing that's most confounding is how long has gluten been the end all be all potential issue? I know in 2006 I could eat buckwheat noodles and be OK afterwards. Some times, I guess they would effect me... but I'm not sure. I can't pinpoint this issue and it's bugging me. I have friends with true celiac and have thrown dinner parties for them always thankful I didn't have the issue... but maybe I had a latent issue? I am sure, gone untreated/unrecognized, gluten intolerance only can get worse. I'm trapped in an unpleasant mystery looking for a hand to hold.

A couple of things. Buckwheat is not wheat - it is gluten free. You can have an intolerance to it but it isn't part of Celiac disease.

Open Original Shared Link

"How much gluten should be consumed prior to being screened for celiac disease?

It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

[Starving Amy]

First of all I thank you all very much for giving me some of your time on my topic. I am sure the newb forums are redundant and pesky. I am grateful for your time and answers.
 

 

 

A couple of things. Buckwheat is not wheat - it is gluten free. You can have an intolerance to it but it isn't part of Celiac disease.

I am ashamed I didn't realize this. This makes sense though. Udon doesn't always ruin me. It might be one of the things that bulk my intestines up after I did eat something that shut my intestines down, though. Thanks for this fact.
 

"How much gluten should be consumed prior to being screened for celiac disease?
It’s best to continue a normal, gluten-containing diet before being screened and diagnosed. If a gluten-free diet has been followed for more than a few weeks, then we recommend eating at least 1 serving of gluten (1/2 slice of bread or a cracker, for example) every day for 12 weeks prior to a blood test and 2 weeks prior to a biopsy. This is often referred to as a “gluten challenge” and should be done under the care of a medical professional."

Eesh - Heavy stuff. Maybe I should do all the other food allergy tests AND THEN do gluten test... The cysts I get from whatever it is, potentially gluten, last for 2 months. I wish there were better tests that would permit me to avoid all of this. =/

 
 

 

Other than my anemia (I have two: thalassemia and iron deficiency) and thyroiditis (dx in '97),

I am sorry to hear you deal with multiple issues. I hope you are well and have a handle on all of it.
 

Read the university website. It is reliable and reputable. It will tell you how much gluten to consume and for how long.

Will do. Thank you for the resource.

 

You can not just eat it for a day, get sick and than get tested a few weeks later. It takes time for antibodies to build in your system and then to get an accurate result. If a challenge is too much, go gluten-free. My husband did this 13 years ago at the request of my allergist and his GP (I was formally diagnosed in 3/13). He strictly complies with the diet (including cross contamination).

Why can't science be more advanced for this stuff? Really, this is just rhetorical and me venting. I'm going to have to experiment with what to do - I think it would be best to get a real dx. On the other hand 2 months of scaring cysts, uncontrolled - sounds miserable. I want off this intestinal ride of madness!

 

You are lucky that your recovery from gluten exposure is only 2 to 3 days. Many folks here take up to three weeks to recover. That's the craziness of celiac disease or gluten intolerance -- nothing is consistent.

=( I am so sorry for them. I can't imagine. It ain't right. medicine needs to get with it.

 

Education and research by you is critical since many docs are just not gluten savvy. I think you have already experienced that.

Yea, I'm getting that now. It's really strange to realize doctor's don't have any kind of grasp on nutrition. If this doc, coming up, doesn't jive I am looking at UCLA's IBS center - which my insurance covers OR going broke at the IBS Treatment Center in Santa Monica.

 

I hope you find your answers! Do not give up!

It's so hard. I waited 3 months for the last set of conversations that went no where with my doc. Now it's looking like another set of months. All I wanted was for January/Feb to be the time I get it figured out and "cured." Siiiigh.

 

 

 

Anyway - I am happy today.

The hush puppies I thought were gluten free, (but were not), that I ate last Wednesday have finally cleared my system and I feel 100% today. Rare - but one day - I'll have 100% all the time. 

[kenlove]

Hi,  with reference to the Japanese noodles,

Udon is always wheat

soba is usually buckwheat in japan but 99& of the time  contains a percentage of wheat and not  soba.

If you can get juwari soba at some healthfood shops, thosse are ok.

Ramen, saimen are all wheat

good luck

[Starving Amy]

Hi,  with reference to the Japanese noodles,

Udon is always wheat

soba is usually buckwheat in japan but 99& of the time  contains a percentage of wheat and not  soba.

If you can get juwari soba at some healthfood shops, thosse are ok.

Ramen, saimen are all wheat

good luck

 

Wowza! Infinitely useful information! Thank you. Sad - I love ramen and I don't know why I thought udon was buckwheat. You're all helping me out a lot!

[kareng]

Wowza! Infinitely useful information! Thank you. Sad - I love ramen and I don't know why I thought udon was buckwheat. You're all helping me out a lot!

Which leads us back to the First Rule Of Celiac Club - read the ingredients all the time!

[cyclinglady]

FYI, there is a celiac center at UC San Diego. It might be worth the drive and an out-of-pocket consult if you do not find answers in LA.

[kenlove]

thanks, I trained as a chef in Japan and got spoiled. It was hard to give up udon

Wowza! Infinitely useful information! Thank you. Sad - I love ramen and I don't know why I thought udon was buckwheat. You're all helping me out a lot!

[Starving Amy]

thanks, I trained as a chef in Japan and got spoiled. It was hard to give up udon

I am jealous. I have worked in media in Tokyo ect for the last 8 years but to study food prep there is a huge honor. I used to eat udon every day but it killed me so I had to give it up. I don't know why I always thought udon was buckwheat - I think I knew about the soba noodles… which I also love so so much. Best soba experience was in Nara after being in the head all day. =/ And now with Fukushima, no more sushi - and I cherish my teas pre 2011… this is a very unfortunate and medieval time for food lovers. 

[kenlove]

tokyo is a great place to work. had a place there for 30+ years. I used to have ramen everyday for lunch. back to the office and then pass out until 3. my partners laughed about it. Now I make the same recipe with juwari soba  which you can get in grocery stores there. Juwari is the key. the food allergies are increasing greatly in Japan. especially wheat and especially with children. They have a seminar each march about it but i cant make it this year.

I am jealous. I have worked in media in Tokyo ect for the last 8 years but to study food prep there is a huge honor. I used to eat udon every day but it killed me so I had to give it up. I don't know why I always thought udon was buckwheat - I think I knew about the soba noodles… which I also love so so much. Best soba experience was in Nara after being in the head all day. =/ And now with Fukushima, no more sushi - and I cherish my teas pre 2011… this is a very unfortunate and medieval time for food lovers.