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Is This Celiac's? Sudden Onset (3 Months), But Even Avoiding Gluten Not Helping

SandraLAVixen

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SandraLAVixen Apprentice
SandraLAVixen
Posted

Hi everyone, I've been lurking here for about 2 months (ever since I thought I might have this condition) and finally decided to post and ask this.

I'm a female of native Russian/Asian descent (mix of Siberian, Chinese, and possibly white Russian or other).

I grew up and lived in the US (California) all my life, ate a rather rich wheat/pasta/bread/gluten diet. I'm in my 20's and always been healthy, excercise a lot (am an athlete).

Last Christmas I fell really ill, I had the worst stomach pain ever, I recovered the next day. But then after a meal it happened again and I had to go to the ER.

The above repeated itself over and over, docs first think it's an infection, then this, then that. ALL tests were normal (bloodwork, CT's, urine, etc).

After 2 weeks of suffering excrutiating pain and being on tons of pain killers, I narrowed it down to eating bread or pasta. If I ate one small piece of bread I would end up in the ER with excrutiating pain.

A friend suggested it could be Celiac's, BUT, I immediately had a Comprehensive Celiac Profile (bloodwork done) and it came back negative. I have always eating breads and pasta all my life, it's probably most of my diet.

But now all of a sudden I can not eat that, I also can not eat certain safe foods, even juices, rice, veggies, etc... cause a small (but minor) amount of discomfort.

I'm slowly wasting away to nothing, I lost about 30 pounds (mind I am a rail-thin model before) and now I am barely having enough energy to live and docs don't know what is wrong.

I am not saying that I have or have not Celiac's (even bloodwork says negative) but I am trying to find articles on Celiac's on where someone has the symptoms but all tests are negative.

I'm also of native/Asian descent, so the genetics is not a risk factor.

If anyone has any ideas, if this is Celiac's or something similar, please help brainstorm ideas. I've probably seen 20-30 doctors all over Los Angeles and no hope.

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ravenwoodglass Mentor
ravenwoodglass
Posted

First welcome to the board. People with any national background can get celiac it doesn't exclude Asians or Russians. Have you had an endoscopy? If not it would be a good idea to have one and tell your doctor you suspect celiac and ask him to take at least 6 to 8 biopsies from different areas.

When all testing is done do give the diet a good strict try. Do read as much as you can here since it isn't just what you eat but how it is prepared that keeps us safe.

When you do start the diet drop dairy at the same time and go with whole unprocessed food as much as you can. Some find a doctor guided elimination diet to be helpful. For me it was a allergist who helped but not all of them deal with food intolerances so if you go with an allergist make sure when you call for an appointment that you ask if that particular doctor will.

I hope you get some relief soon but if you are celiac it can take some time to heal.

heidi g. Contributor
heidi g.
Posted

I would get a colonoscopy done asap because it sounds like you have something called crohns disease and to only be sure you would need a colonoscopy done. When they tested me for celiacs my blood work came back negative but then they did a colonoscopy and endoscopy and took a biopsy and showed signs of celiac. Crohns disease is excruciatingly pain ful, and you lose alot of weight. It also doesn't matter what race you are, its an autoimmune disease anybody can have it. Get a colonoscopy done asap because whatever it is, they most likely will be able to find it with that.

  • 1 month later...
SandraLAVixen Apprentice
SandraLAVixen
Posted
  • Author

Hi I just wanted to post an update.

I have had pillcam done, Crohn's Disease was ruled out prior, everything came back NEGATIVE (no cracked mudd appearance, no ulcers, nothing) but the symptoms are still there (severe pain 1-2 hours after eating any bread).

I had biopsies done and also stool test for Celiac's, all NEGATIVE for literally everything.

I'm not trying to "pin" this on Celiac's disease, but I was wondering if there are any last remaining tests for Celica's?

pricklypear1971 Community Regular
pricklypear1971
Posted

Yes. Relief from symptoms when you start the gluten free diet.

You may be NCGI - and there's no test for that. Only solution is to stop eating gluten.

SandraLAVixen Apprentice
SandraLAVixen
Posted
  • Author

You may be NCGI - and there's no test for that. Only solution is to stop eating gluten.

Is it acute? what about rice and mini-wheat cereals? those are the only two breads that do not cause any pain for some reason. What is different about them?

mushroom Proficient
mushroom
Posted

You can exclude rice from being a gluten problem for sure, because it does not contain gluten. Mini-wheat cereal is a different story. I have no explanation for your ability to tolerate that, unless you get a delayed reaction to it that you do not recognize as coming from it.

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SandraLAVixen Apprentice
SandraLAVixen
Posted
  • Author

Mini-wheat cereal is a different story. I have no explanation for your ability to tolerate that, unless you get a delayed reaction to it that you do not recognize as coming from it.

I have been eating mini-wheats almost every morning for two months, it's not causing any pain. What if it's not gluten but something else about bread? I tried a 1/4th of a doughnut in the morning two weeks ago and was killer pain. X.X

mushroom Proficient
mushroom
Posted

I do know that there are some anomalies in our intolerances. It took me so long to figure mine out because for me pizza wa always comfort food - I never wanted to eat Mexican because it killed me, but would always beg to go have pizza because I had no repercussions from it (then!!). You might try reading this article:

Open Original Shared Link

Some countries such as France and some manufacturers tend to use more traditional wheats and gluten content can also vary widely between products. Pizza dough for example is high in gluten, but the wheat used in cookies or biscuits is lower in gluten and you may find that you can tolerate some wheat products and not others.

Skylark Collaborator
Skylark
Posted

I have been eating mini-wheats almost every morning for two months, it's not causing any pain. What if it's not gluten but something else about bread? I tried a 1/4th of a doughnut in the morning two weeks ago and was killer pain. X.X

It could be yeast, dough conditioners, preservatives like propionic acid, or GMO wheat. Have you tried homemade bread with organic flour?

pricklypear1971 Community Regular
pricklypear1971
Posted

It could be yeast, dough conditioners, preservatives like propionic acid, or GMO wheat. Have you tried homemade bread with organic flour?

...and that's why I suggested you compare labels between what works and doesn't.

And rice isn't glutenous but regular rice crispies contain barley malt - which is glutenous. I don't know what else they put in it. That said, regular rice crispies are relatively low on the gluten scale compared to a donut.

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