Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

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

SandraLAVixen

Recommended Posts

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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


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.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      128,383
    • Most Online (within 30 mins)
      7,748
    haleyspurlock1
    Newest Member
    haleyspurlock1
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.1k
    • Total Posts
      70.9k
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • trents
      Negative biopsy and seeking doctor recs in Los Angeles

      By trents · Posted

      Welcome to the forum, @englishbunny! Did your celiac panel include a test for "Total IGA"? That is a test for IGA deficiency. If you are IGA deficient, other IGA test resultls will likely be falsely low. Were you by any chance already practicing a reduced gluten free diet when the blood draw was done?
    • englishbunny
      Negative biopsy and seeking doctor recs in Los Angeles

      By englishbunny · Posted

      I'm upset & confused and really need help finding a new gastro who specializes in celiac in California.  Also will welcome any insights on my results. I tested with an isolated positive for deamidated IGA a few months ago (it was 124.3, all other values on celiac panel <1.0), I also have low ferritin and Hashimotos. Mild gastro symptoms which don't seem to get significantly worse with gluten but I can't really tell... my main issues being extreme fatigue and joint pain. The celiac panel was done by my endocrinologist to try and get to the bottom of my fatigue and I was shocked to have a positive result. Just got negative biposy result from endoscopy. Doctor only took two biopsies from small intestine (from an area that appeared red), and both are normal. Problem is his Physician's Assistant can't give me an answer whether I have celiac or not, or what possible reason I might have for having positive antibodies if I don't have it. She wants me to retest bloods in a month and says in the meantime to either "eat gluten or not, it's up to you, but your bloodwork won't be accurate if you don't" I asked if it could be I have early stage celiac so the damage is patchy and missed by only having two samples taken, and she said doctor would've seen damaged areas when performing endoscopy (?) and that it's a good sign if my whole intestine isn't damaged all over, so even if there is spotty damage I am fine.  This doesn't exactly seem satisfactory, and seems to be contrary to so much of the reading and research I have done. I haven't seen the doctor except at my endoscopy, and he was pretty arrogant and didn't take much time to talk. I can't see him or even talk to him for another month. I'm really confused about what I should do. I don't want to just "wait and see" if I have celiac and do real damage in the meantime. Because I know celiac is more that just 'not eating bread' and if I am going to make such a huge lifestyle adjustment I need an actual diagnosis. So in summary I want to find another doctor in CA, preferably Los Angeles but I don't care at this stage if they can do telehealth! I just need some real answers from someone who doesn't talk in riddles. So recommendations would be highly welcomed. I have Blue Shield CA insurance, loads of gastros in LA don’t take insurance at all 😣
    • trents
      Oats gluten free?

      By trents · Posted

      Okay, Lori, we can agree on the term "gluten-like". My concern here is that you and other celiacs who do experience celiac reactions to other grains besides wheat, barley and rye are trying to make this normative for the whole celiac community when it isn't. And using the term "gluten" to refer to these other grain proteins is going to be confusing to new celiacs trying to figure out what grains they actually do need to avoid and which they don't. Your experience is not normative so please don't proselytize as if it were.
    • Levi
      My Adult daughter is blaming me for her "possible" Celiac disease.

      By Levi · Posted

      When I was first Dg’d I researched like mad. One thing I remember from then, which may have changed with advancement in medical science, is that Coeliac is a first generation disease which means either you or your husband need be Coeliac for your daughter to have inherited it. Far as I know, and I’m not a scientist just a victim, the amount of gluten (wheat, rye, or barley) one consumes does not cause a person to contract Coeliac Disease. So if neither of you as her biological parents have Coeliac then your daughter cannot pass any blame should she contract this horrific disease.     It’s humbling, and sometimes I believe GOD allows such as these autoimmune diseases for those who need it most. 
    • Lori Lavell
      Oats gluten free?

      By Lori Lavell · Posted

      The body reacts to all grain proteins in all grains from my observation. Call it Gluten, Gliadin, which is what they test for commonly, however, I am Celiac and react with dermatitis herpetiformis to corn and the glutenous protein in it is called Zein. They only test for Gliadin. Testing needs to be updated in my opinion. It only take a small parts per million to continuously create systemic inflammation. This is not productive to healing and all grains contain some for gluten like substance. It's called Molecular Mimicry.
×
×
  • Create New...