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Help Me Cope With This Drastic Life Change

Trymester

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Trymester Contributor
Trymester
Posted

I started having side pains and digestive problems 2 years ago. I just turned 26. I kept denying this gluten intolerance thing for as long as possible.

How could I have lived for 24 years as a big-time bread eater (I really love(d) my breads) and not have experienced any issues at all. Since 2 years ago, I have had endoscopies, colonoscopies, HIDA Scan, Gastric Emptying Scans, Cat Scans, and MRI done, and other than some Gastroparesis, everything came up normal. Blood tests and biopsies all seemed to suggest no Chron's, or Celiac Disease stuff. I finally went ahead and did the Enterolab tests, and these were my results (below).

Is it possible that these tests are wrong, (i.e. of course they'll find Gluten Sensitivity, that's what they're payed to look for), or is it time to freak out everyone that loves and cares for me, by telling them that I can no longer eat bread? I would really appreciate any help or words of encouragement. Thanks.

======================================================================================================

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value

Fecal Anti-gliadin IgA 36 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 10 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score 739 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow

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Dixiebell Contributor
Dixiebell
Posted

Did your Dr. give you copies of all your tests you had done? If not you might want to do that. Some Dr.s will not diagnose if you are borderline on testing. That said, the celiac tests are not 100%. The endoscopy and biopsy can miss the damage, so that is not 100% either. Did the Dr take enough biopsies? Even if he/she did they still could have missed the damage. Maybe at the time of your tests you did not have a lot of damage.

There is a newer test for celiac, DGP deamidated gliadin pedtide. This one is supposed to be more sensitive.

Maybe try this test and even if it is negative you can do a trial for three months and see if your symptoms improve.

cassP Contributor
cassP
Posted

ya, agree with above poster. im always suggesting to people to get a copy of their results.... so many doctors do not order complete tests... there's so many different tests to diagnose celiac, and it can be so tricky that people may need ALL of the tests to get any answers! if i had not gotten most of the tests- i would probably still be eating gluten- maybe.

to me, the enterolab tests suggest your body doesnt like gluten and you shouldnt eat it.

if you feel comfortable posting your blood tests up here- we can help u understand them.

plus, if you were not eating enough gluten prior to testing- that could make them negative too.

Kay DH Apprentice
Kay DH
Posted

I am very sensitive to gluten so am gluten-free. I even have reactions from labeled gluten-free foods that were "processed in a plant that also processed wheat.." I have no other food intolerances. I also am not sure what I have, largely because my tests have all been negative. I did not try the Enterolab test. My genetic test was positive for HLA-DQ8, but the GI said that only gave me a 10% chance of having celiac. He only took 1 biopsy on the endoscopy, and it was negative (4 or more biopsies are recommended because of the spotty nature of inflammation). Celiac panel blood test was negative, but I had been gluten-free for several months so results can't be trusted. In short, even if your previous tests were negative, you can still have celiac or gluten sensitivity. Easiest way to tell is to go completely gluten-free after your tests are done and see how you feel. It took 3 days for my GI problems to go away, and other symptoms took a few weeks to 6 months (undiagnosed rashes I'd had for a few decades).

On the issue of bread. My two food loves are bread and chocolate. I hate going into bakeries and seeing all the goodies that I can't eat. I can eat my sourdough wheat bread (real sourdough, not flavored) and it is the only wheat I can eat. There are now a lot of gluten-free baked goods and recipes that are good to great, and fairly easy with a good breadmaker. Going gluten-free is a tremendous life change that has social, dietary, health, and emotional impacts, and it can be more expensive. It is also healthier. Best wishes on your search for answers. It can be quite frustrating.

Kay DH Apprentice
Kay DH
Posted

I went 55 years as a bread lover, and didn't develop the sensitivity to gluten until I got the flu a year ago. Two weeks later the GI, stiff joints, muscle aches, mood, and lethargy kicked in. Stress, viruses, bacteria, and other nasty things can trigger inflammatory responses such as celiac. Perhaps just overexposure can, too. I took my dinner to and helped out at a friend's party. First she had me put the crackers out (washed hands), then the muffins (washed hands), then cookies (hands), then the pasta salad, then asked me to slice the bread (hands too dry by this time, had hubby slice the bread). We live in a very gluten-saturated society. Maybe one reason for the overweight problem (not all gluten sensitivity is underweight). ;)

cassP Contributor
cassP
Posted

I am very sensitive to gluten so am gluten-free. I even have reactions from labeled gluten-free foods that were "processed in a plant that also processed wheat.." I have no other food intolerances. I also am not sure what I have, largely because my tests have all been negative. I did not try the Enterolab test. My genetic test was positive for HLA-DQ8, but the GI said that only gave me a 10% chance of having celiac. He only took 1 biopsy on the endoscopy, and it was negative (4 or more biopsies are recommended because of the spotty nature of inflammation). Celiac panel blood test was negative, but I had been gluten-free for several months so results can't be trusted. In short, even if your previous tests were negative, you can still have celiac or gluten sensitivity. Easiest way to tell is to go completely gluten-free after your tests are done and see how you feel. It took 3 days for my GI problems to go away, and other symptoms took a few weeks to 6 months (undiagnosed rashes I'd had for a few decades).

On the issue of bread. My two food loves are bread and chocolate. I hate going into bakeries and seeing all the goodies that I can't eat. I can eat my sourdough wheat bread (real sourdough, not flavored) and it is the only wheat I can eat. There are now a lot of gluten-free baked goods and recipes that are good to great, and fairly easy with a good breadmaker. Going gluten-free is a tremendous life change that has social, dietary, health, and emotional impacts, and it can be more expensive. It is also healthier. Best wishes on your search for answers. It can be quite frustrating.

you're gluten free, but you're eating sourdough wheat bread????? that has gluten in it

????

cassP Contributor
cassP
Posted

oops, nevermind kay- just saw your earlier post about your sourdough being made with gluten-free flours :/

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Trymester Contributor
Trymester
Posted
  • Author

CassP, I haven't even looked at those blood test results in like 1-2 years. I did post the stool sample results here though, and I thought that was bette and more accurate than blood tests.

To the person who had enjoyed gluten for over 50 years, what are the odds that you, or other people who have eaten gluten most of their lives without ANY symptoms, can work gluten back into their diets like 3-5 years later?

Jestgar Rising Star
Jestgar
Posted

If gluten is damaging your intestine, which appears to be the case based on your fecal fat score, then any time you eat gluten you will be destroying your intestine whether you feel bad or not.

The lifestyle gets easier with time. I encourage you to adapt your diet completely now, and make decisions about later, later.

SaraKat Contributor
SaraKat
Posted

I was dx'd 2 mos ago and it really isn't that bad except when ordering dinner out. I had the side pains too- were yours on the left side near the lower rib cage?

It seems some of your tests from Enterolab are high, definitely get your copies of earlier blood tests.

I do miss eating pasta and bread out, but if I really want pasta I go to NYC to a gluten-free restaurant there or I just cook it at home. In the last 2 months I have had it twice. I've been ordering more fish or steaks out.

Good luck!

Trymester Contributor
Trymester
Posted
  • Author

I have had pains come and go, top and bottom, and all over the abdominal region. None of my blood tests have ever shown anything and I DO have my copies.

I live in NYC so I'm sure I can always find gluten-free options. The worst of it is how will I go about telling my gluten-free and my family that I can't eat the food I love. I wish I could just start over in a different country and forget about the people that know me. This disease would've been easier to accept if I had been with it since birth.

cassP Contributor
cassP
Posted

I have had pains come and go, top and bottom, and all over the abdominal region. None of my blood tests have ever shown anything and I DO have my copies.

I live in NYC so I'm sure I can always find gluten-free options. The worst of it is how will I go about telling my gluten-free and my family that I can't eat the food I love. I wish I could just start over in a different country and forget about the people that know me. This disease would've been easier to accept if I had been with it since birth.

it IS hard, but im jealous you live in NYC- there's prolly a lot more options for u-> i recently saw there's a restaurant on Bleeker i want to go to next trip- called: Risotteria (i think)- it's mostly or all gluten free... gluten-free pasta & pizza options, etc

The Cupcake Stop truck has SOME gluten-free options...

there's a lot more too...

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