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Recently figured out I was gluten intolerant-questions

trainerj

By trainerj
in Coping with Celiac Disease

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trainerj Rookie
trainerj
Posted

Hey everyone, 

I am new to this and relatively new to figuring out I was gluten intolerant.  I had lost about 20 pounds over the course of 2 months and had a colonoscopy and scheduled endoscope to see what was going on.  I was getting massive stomach cramps whenever I ate bread, explosive diarrhea when I had anything with lactose, and was in a state of continual brain fog and anxiety.  The medication the doctors gave me, including PPIs didn't seem to help.  I literally thought I was dying of stomach cancer.  A week before my upper endoscope I started a gluten free diet and saw a massive reduction in my symptoms.  My brain fog and anxiety went away almost immediately, so did my heartburn, I got this whenever I ate bread, and I didn't have the massive cramping feeling in my stomach, I gained back about 7 pounds, and my diarrhea began to go away.  I had a blood test for celiac but was negative for it, the doctor told me the best way to tell was to continue to eat gluten and get my endoscope and have a biopsy done.  Since I felt so good I decided not to get the endoscope, since the GI surgeon said I was either one of two things: celiac or had non-celiac gluten sensitivity.  He said the treatment is the same for both; no gluten.

 

The questions I have is I am still having some issues, it seems like if I eat anything with corn or soy I get diarrhea.  I also still have a nagging discomfort under my left ribs.  I have been gluten-free for about 2 weeks and that is what I am still experiencing. I have read that I may need to cut out soy, sunflower oil, safflower oil, and corn as well as the lactose and gluten to really start seeing good results.  Has anyone else experienced this stuff before?  Do you guys think I should have gotten the upper endoscope? 

Thank you so much for your input. When I was researching on what I could possibly have wrong with me, it was this site that made me try to go gluten free and it saved my health.  I know most doctors don't recognized NCGI so I don't know how long I would have suffered though this, as no doctors I worked with suggested going off gluten.

Thank you for your responses and God Bless!

Josh

 

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cyclinglady Grand Master
cyclinglady
Posted
1 hour ago, trainerj said:

Hey everyone, 

I am new to this and relatively new to figuring out I was gluten intolerant.  I had lost about 20 pounds over the course of 2 months and had a colonoscopy and scheduled endoscope to see what was going on.  I was getting massive stomach cramps whenever I ate bread, explosive diarrhea when I had anything with lactose, and was in a state of continual brain fog and anxiety.  The medication the doctors gave me, including PPIs didn't seem to help.  I literally thought I was dying of stomach cancer.  A week before my upper endoscope I started a gluten free diet and saw a massive reduction in my symptoms.  My brain fog and anxiety went away almost immediately, so did my heartburn, I got this whenever I ate bread, and I didn't have the massive cramping feeling in my stomach, I gained back about 7 pounds, and my diarrhea began to go away.  I had a blood test for celiac but was negative for it, the doctor told me the best way to tell was to continue to eat gluten and get my endoscope and have a biopsy done.  Since I felt so good I decided not to get the endoscope, since the GI surgeon said I was either one of two things: celiac or had non-celiac gluten sensitivity.  He said the treatment is the same for both; no gluten.

 

The questions I have is I am still having some issues, it seems like if I eat anything with corn or soy I get diarrhea.  I also still have a nagging discomfort under my left ribs.  I have been gluten-free for about 2 weeks and that is what I am still experiencing. I have read that I may need to cut out soy, sunflower oil, safflower oil, and corn as well as the lactose and gluten to really start seeing good results.  Has anyone else experienced this stuff before?  Do you guys think I should have gotten the upper endoscope? 

Thank you so much for your input. When I was researching on what I could possibly have wrong with me, it was this site that made me try to go gluten free and it saved my health.  I know most doctors don't recognized NCGI so I don't know how long I would have suffered though this, as no doctors I worked with suggested going off gluten.

Thank you for your responses and God Bless!

Josh

 

Welcome, Josh!

You have two choices:

1) go back on gluten and get tested.  This will help confirm if you have celiac disease or not.  Some 10% of celiacs are seronegative.  You should confirm if you had the complete celiac panel.  I personally am only positive on the DGP IgA, even on follow-up Testing.  Okay, if you have NCGI, the treatment is the same.  But with a celiac disease diagnosis, that puts you at risk for other autoimmune disorders or cancer (though rare).    You could have both IBD (Crohn’s or Ulcerative Colitis) and celiac disease or maybe Hashimoto’s Thyroiditis.  Knowing this, your doctors can be on the alert for future problems.  It can also help you adhere to a LIFELONG gluten free diet because you will have NO DOUBT.  The endoscopy also provides an initial baseline. 

2) stay gluten free for life.  Learn all that you can about cross contamination, avoid eating out (it is like Russian Roulette).  Eat fewer processed foods.  Learn to read labels.  Keep a food and symptom diary to identify other food intolerances.  Read our Newbie 101 advice pinned at the top of the “Coping”section of the forum.  Healing can take months to YEARS.  

I have a formal diagnosis (four years ago) and my only known symptom was anemia.  No GI issues.   My hubby went gluten-free 16 years ago per the poor advice of two medical doctors.  We both know odds are that he has celiac disease, but we can not afford for him to be sick for a three month gluten challenge.    He will tell you that I get way more support from medical, family and friends.  We were easily able to get our daughter tested because of my diagnosis.  Easy for me to get a bone scan confirming osteoporosis, etc.  

Only you can decide what is best in your case.  I wish you well.

 

squirmingitch Veteran
squirmingitch
Posted

Hey Josh!

Corn is hard to digest even when one has a perfect gut. Imagine a damaged gut trying to cope with corn. Ditch the corn for a while. As far as soy goes, many of us, especially in the first 6 months to a year, have problems with soy. Some have problems with soy for years & years & others are able to have soy after their guts heal up. Some never have problems with soy at all. We are all individuals & react differently to different things.  I've never heard anyone having problems with sunflower or safflower oil in the 6 years I've been on this site. As far as lactose goes, again, I'm going to say we are all individuals...... I never had a problem with lactose, some do, some cut it out for a period of time & then later find it presents no problem for them and some can not tolerate it at all and some don't have any problem.

A food log is a great tool for you to use to figure out what might be a problem.

  • 2 weeks later...
trainerj Rookie
trainerj
Posted
  • Author
On ‎10‎/‎19‎/‎2017 at 7:05 PM, squirmingitch said:

Hey Josh!

Corn is hard to digest even when one has a perfect gut. Imagine a damaged gut trying to cope with corn. Ditch the corn for a while. As far as soy goes, many of us, especially in the first 6 months to a year, have problems with soy. Some have problems with soy for years & years & others are able to have soy after their guts heal up. Some never have problems with soy at all. We are all individuals & react differently to different things.  I've never heard anyone having problems with sunflower or safflower oil in the 6 years I've been on this site. As far as lactose goes, again, I'm going to say we are all individuals...... I never had a problem with lactose, some do, some cut it out for a period of time & then later find it presents no problem for them and some can not tolerate it at all and some don't have any problem.

A food log is a great tool for you to use to figure out what might be a problem.

Thank you for the reply!  I have been off corn and had very little soy and feel even better.  I don't think I have an issue with sunflower or safflower oil, it was just in some of the corn products I was eating so that is why I though I had an issue with it. The only thing I notice now is slight discomfort under my left ribs every once in awhile but nothing bad, and I heard this can take awhile to go away.

Jmg Mentor
Jmg
Posted
36 minutes ago, trainerj said:

Thank you for the reply!  I have been off corn and had very little soy and feel even better.  I don't think I have an issue with sunflower or safflower oil, it was just in some of the corn products I was eating so that is why I though I had an issue with it. The only thing I notice now is slight discomfort under my left ribs every once in awhile but nothing bad, and I heard this can take awhile to go away.

Hi Josh and another welcome :)

its still v early days for you on the diet, so hopefully you still have more healing to come. I found my stomach was unsettled for a good few weeks and the more you can avoid processed foods and eat well the better. Omelettes with veggies were a lifesaver for me. Filling, nutritious and easy to digest. 

Once your healing you can add things back in and check your reaction. I found dairy was also an issue, I react to the casein protein.

it gets better and easier with time. Lots of support here if you need it. 

All the best!

matt

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