Not Diagnosed (yet)

[lesson]

This is my first post and if this is not the correct place, please redirect the post for me.

While searching on the internet I learned that Celiac is a central theme to Osteoporosis (which has been unresponsive to meds for the past 5 years or so), Interstitial Cystitis (to some degree), peripheral neuropathy (dxed one year ago and is seen in 16 %of patients) and migraines.

I zillion years ago I had ulcerative colitis and have had an ileostomy for 30 years.

Some very initial blood work by my neurologist has been started. I do not know the results.

My question: I frequently am bloated and nauseous. But I don't understand something, and again I do not know if this is Celiac. Is it possible to eat a certain food (a sandwich) and feel fine one day, eat the same exact thing the very next day and feel awful the rest of the day and the next?

I can eat a food that is common to my diet and be okay...but another time feel awful..is this a celiac symptom?

I know no one to ask

[mushroom]

This is my first post and if this is not the correct place, please redirect the post for me.

While searching on the internet I learned that Celiac is a central theme to Osteoporosis (which has been unresponsive to meds for the past 5 years or so), Interstitial Cystitis (to some degree), peripheral neuropathy (dxed one year ago and is seen in 16 %of patients) and migraines.

I zillion years ago I had ulcerative colitis and have had an ileostomy for 30 years.

Some very initial blood work by my neurologist has been started. I do not know the results.

My question: I frequently am bloated and nauseous. But I don't understand something, and again I do not know if this is Celiac. Is it possible to eat a certain food (a sandwich) and feel fine one day, eat the same exact thing the very next day and feel awful the rest of the day and the next?

I can eat a food that is common to my diet and be okay...but another time feel awful..is this a celiac symptom?

I know no one to ask

Hello, and welcome to the forum.

I believe the answer to your question would have to be yes. If we all responded in the same way to the same food(s) each time we ate them, our diagnosis would be much more obvious. The only thing that I consistently reacted violently to in the ten or so years before I was (self) diagnosed was pasta, and that's why I stopped eating it. For all the other gluten-containing foods the response was inconsistent for me. I could consume bread and pizza often without a noticeable worsening of what had become entrenched symptoms, so when I did have a bad reaction I did not relate it to the bread. Pizza was my favourite food and most often I did not have a bad reaction to it. But when I did really react I did not blame it n the pizza because I always had the low level response (including, obviously to the pizza), and that did not stand out as being a trigger. Hope this helps.

Good luck with the testing and let us know how it goes.

[Takala]

Yes.

I am a less sensitive type and could probably eat a piece of normal bread and not feel too bad. But wheat based refined starches used in some processed foods just about lay me flat out.

If you don't get anywhere with the neuro, try a gastro. If that fails, try a self monitored elimination diet with a food diary. Absolutely INSIST that ALL doctors give you copies of your test results, by law they have to do this, and if they balk, tell them it's the law and you'll report them to the state's Attorney General if they don't cooperate. The neurologist's office may balk, again, get the test results and keep them for reference. Don't ever accept

"your test was normal" over the phone.

I went thru a huge and horrible delay in getting treatment for something very painful but easily fixable last summer because I had this idiot physician say he couldn't diagnose me without seeing my complete medical history and past tests ( I had taken some of the past records with me) and that rip off artist knew that his office took at least a month to have records sent and processed from another office. When I tried to repeated see if the records had arrived the office kept sending me to the wrong voicemail, etc.

I took the relevant test to a doctor who wasn't a con, he took one look, said Oh my, you shouldn't have that, and immediately started the process of scheduling me for surgery !

The piece de resistance was that the insurance then BILLED US for the records transfer (which is illegal, btw) to the idiot who was trying to stall but charged us for the complete medical work up he didn't do.

Remember that insurance companies only reimburse doctors for things that they thought it was relevant to test you for, if you've been unlucky enough to have a negative test for something somewhere down the line, you may have been slotted into the "she can't have that" basket for eternity. And doctors will only order things that they think they can get reimbursed for easily.

[maile]

My question: I frequently am bloated and nauseous. But I don't understand something, and again I do not know if this is Celiac. Is it possible to eat a certain food (a sandwich) and feel fine one day, eat the same exact thing the very next day and feel awful the rest of the day and the next?

I can eat a food that is common to my diet and be okay...but another time feel awful..is this a celiac symptom?

I know no one to ask

I agree with the other posters and the answer is yes.

If you search the "Coping with" section you'll find a thread called "rain barrel effect" which has some interesting information about the build up of symptoms/reactions

for me I know that previously I could have gluten 1x a week or so and only be moderately uncomfortable but have it 2x in one day or on consecutive days then pain, gas, bloating etc would start...now even 1x and I react

good luck in your search and if no ones mentioned it yet, If your MD wants you to have the endoscopy as well you have to continue to eat gluten foods until the day of the biopsy.

[lesson]

I agree with the other posters and the answer is yes.

If you search the "Coping with" section you'll find a thread called "rain barrel effect" which has some interesting information about the build up of symptoms/reactions

for me I know that previously I could have gluten 1x a week or so and only be moderately uncomfortable but have it 2x in one day or on consecutive days then pain, gas, bloating etc would start...now even 1x and I react

good luck in your search and if no ones mentioned it yet, If your MD wants you to have the endoscopy as well you have to continue to eat gluten foods until the day of the biopsy.

[lesson]

Thank you all.

The first time I discussed this with my PCP she said if I suspect Celiac just stop eating foods with wheat and gluten. But, I learned that I can not be 'officially' diagnosed if I eliminate those foods, so they are still in diet.

I will check out the topic "rain barrel effect".

I also understand that b/c blood work may come back negative, that doesn't mean Celiac doesn't exist.