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Frustrated

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canner2u Newbie
canner2u
Posted

HI I am new here with just lots of questions, but first a little about me. I am 43 and single. My parents are diabetics and have high blood pressure. My mom also has GIST, a rare form of cancer. Neither have Celiac to our knowledge. I also weigh 330 pounds.

When I was about 25 I had a mild case of food poisioning, from that point on I noticed that my bowel movements would be very loose at times lasting a day or 2. I did not notice any certain pattern to the reasoning behind the loose bowels. 3 years later I had a rough bout of the loose bowels for about 6 weeks making it very difficult to do anything. NO I did not go to the doctor as I did not h ave insurance and just thought it was nothing. Since that time, I will have bouts of loose bowels every few days. Along with them I will have minor to severe stomach cramps and there is not always enough time to make it to the restroom.

I have had the Celiac blood tests and they came back negative. I have had xrays and cat scans and nothing has shown up, so now my doctor thinks it is just me. I have seen 3 different doctors and they all basically say the same thing, you need to stop eating fried foods, however I have noticed that even if I do not eat fried foods, I can still have the stomach cramps and loose bowels, when this is mentioned to them, they just say it is my weight and such.

I have days when I have lots of energy and then days where I feel foggy and tired. Days when I can not seem to focus on what even my name is let alone what I need to do to work.

I guess what I am asking here is has anyone else had this happen where all the testing comes back negative and it is said to be in your head?

I really am going nuts with this and just do not have the money to pay for any more testing as my insurance will not pay for the repeating of the negative tests. I also do not like the fact that I am basically chained to a bathroom.

Oh and for those wondering, yes I have tried all the diets, and while I can have lose some weight I will gain it back while still following the same exact diet.

Candy

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Mango04 Enthusiast
Mango04
Posted

I have never been formally tested but I'm gluten-free and will never go back to eating gluten. If you're really done with testing, but want to try the diet, just go ahead and try it. Gluten could be your problem, dairy could be your problem...there's a whole bunch of possibilities, and in some circumstances figuring it out on your own (without the help of doctors) is the best way to do it :)

You might look into starting a food diary to keep track of your symptoms and how they correspond to what you're eating. An elimination diet might help you as well. Good luck :)

gfpaperdoll Rookie
gfpaperdoll
Posted

Here is the main test that you need. Quit eating gluten (wheat, rye, barley, oats) & at the same time quit eating dairy. Both of those things have an opiate effect on the brain, you may have some withdrawal... but it will go away, you should see a change in your appetite & your food cravings go away. read some books, Dangerous Grains to start out with.

I also suggest that you do not eat white potatoes, no beans & no lentils & no peanuts - this will get rid of the most offending lectin foods. A lot of us have problems with potatoes, anyway. Peanuts are a legume &, according to the Paleo Diet Book, increase intestinal permeability. I am now eaing almond butter instead of PB.

I would NOT buy any of the gluten free products like breads & crackers, so that leaves you with rice & corn meal or corn tortillas as your only grains - there are other grains, but in your situation I would not add them in...

I would advise the bulk of your diet to be meat, seafood, veggies, fruit & nuts & eggs. No need to count stuff - but just eat regular portions & you should eat at least two snacks a day with a protein & a fruit or veggie. You can limit the corn & rice to one serving about every 3 days or whenever you feel like you want a little carb. We have tons of recipes for everything, gluten-free, DF, corn free, egg fre, soy free.

now when you go gluten-free & DF you might have another food problem like soy or eggs, etc. so watch out for those.

& we think nothing of weight, like poop, it is just a symptom of something no more no less, some on here have lost, some need to gain, we are not big on judging anyone because of a symptom that they have. We all know that the diet is difficult at first, but it gets to be the best thing that will happen to you - that is why we all stick with it - plus believe it or not it just gets so easy...

I am double DQ1 & that comes with food intolerances & neurological stuff & it is hard to diagnose via blood tests, we call it gluten intolerant - & we really suffer a lot if we do not stay gluten-free & for most gluten intolerant people dairy free as well..

welcome, keep us posted on your day to day beginnings, we will be glad to help you.

gfpaperdoll Rookie
gfpaperdoll
Posted

Here is the main test that you need. Quit eating gluten (wheat, rye, barley, oats) & at the same time quit eating dairy. Both of those things have an opiate effect on the brain, you may have some withdrawal... but it will go away, you should see a change in your appetite & your food cravings go away. read some books, Dangerous Grains to start out with.

I also suggest that you do not eat white potatoes, no beans & no lentils & no peanuts - this will get rid of the most offending lectin foods. A lot of us have problems with potatoes, anyway. Peanuts are a legume &, according to the Paleo Diet Book, increase intestinal permeability. I am now eaing almond butter instead of PB.

I would NOT buy any of the gluten free products like breads & crackers, so that leaves you with rice & corn meal or corn tortillas as your only grains - there are other grains, but in your situation I would not add them in...

I would advise the bulk of your diet to be meat, seafood, veggies, fruit & nuts & eggs. No need to count stuff - but just eat regular portions & you should eat at least two snacks a day with a protein & a fruit or veggie. You can limit the corn & rice to one serving about every 3 days or whenever you feel like you want a little carb. We have tons of recipes for everything, gluten-free, DF, corn free, egg fre, soy free.

now when you go gluten-free & DF you might have another food problem like soy or eggs, etc. so watch out for those.

& we think nothing of weight, like poop, it is just a symptom of something no more no less, some on here have lost, some need to gain, we are not big on judging anyone because of a symptom that they have. We all know that the diet is difficult at first, but it gets to be the best thing that will happen to you - that is why we all stick with it - plus believe it or not it just gets so easy...

I am double DQ1 & that comes with food intolerances & neurological stuff & it is hard to diagnose via blood tests, we call it gluten intolerant - & we really suffer a lot if we do not stay gluten-free & for most gluten intolerant people dairy free as well..

welcome, keep us posted on your day to day beginnings, we will be glad to help you.

gfpaperdoll Rookie
gfpaperdoll
Posted

oops double post - not that I could't type another page full ;)

missy'smom Collaborator
missy'smom
Posted

Welcome.

My sister was always tiny but has gained alot of weight so that she looks like a different person. She had her hormones checked and her Dr. diagnosed her with adrenal fatigue, which is linked to celiac disease. I don't know alot about it but sis said that she was told adrenal gland wasn't working properly and regulating hormones correctly and that's why she has gained weight and can't get rid of it. Her weight gain coincided with the start of her celiac disease symptoms. You may want to check into it. Have you been tested for diabetes? With you family history you should.

CarlaB Enthusiast
CarlaB
Posted

Trying out the gluten-free diet is a good suggestion.

You might also look into bacterial dysbiosis ... Google it, you will learn a lot! I was tested by a 3 day random sample stool test and tested positive for Klebsiella and Citrobacter while having none of some of the good bacteria despite supplementing probiotics.

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mftnchn Explorer
mftnchn
Posted

Hi, and welcome. This is a place where lots of people are willing to give help and support.

I notice that you did not have a biopsy. It is not uncommon at all on this forum to see people who have both negative blood tests and biopsy but still have celiac or at least a very severe gluten sensitivty that responds well to the diet.

In addition, it is not uncommon that someone has negative blood tests but positive biopsy and is indeed celiac. X-rays wouldn't take the place of a good biopsy.

It seems to me that you could try asking for a good referral to a doctor that would be near your location. A doctor who understands the newest information about celiac and would see that you really should have a biopsy and could review everything you have had.

Also you didn't say what blood tests you have had. Did you have all 5 as recommended on this forum and places like Columbia University? Some people have been told they had negative tests and when they asked for a copy found out they were actually positive.

Ultimately I agree, try the diet. To help your healing as has been said cut out more things than just gluten. Be sure to take a good probiotic and vitamins and stuff as people talk about here. Try a little walking or something every day. The point is to feel better right?

Just a note that gluten free food can be high in simple carbohydrates and sugar, and that might not be best for you with the family history of diabetes and high blood pressure. So just watch what you substitute.

Hope you will stay here and keep us up to date on your progress.

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