Unwilling to poison myself for the blood test

[Kurasz]

I just opened my account here, but i have been refering to this site for the last 3 months. I have been experiencing every symptom of celiacs throughout my entire life. Over the last year i became extremely ill with constant vomiting, constipation, diarrhea, severe pain in my bowels, rash on my abdomen, and fevers every time i have a bowel movement. I went from 185 lbs down to 115 lbs and after 2 months of constant sickness i finally agreed to a hospital visit. The drs did almost every test except celiacs. They referred me to a GI, but i had already went gluten free 2 weeks before the visit on my wifes advice. I immediately stopped vomiting within one day of the gluten free diet. When i visited the GI be said all signs point to celiacs disease. I had another appointment with a surgeon the following week because i had a hernia surgery 13 years ago and they thought that might be the problem. Turns out there was nothing wrong with the hernia, but ct results showed that my stomach was enlarged and my colon shrunk. There was also some narrowing in my intestines. I will see the GI again in 1 week. I need a diagnosis as soon as possible because i haven't been able to work for over 4 months now. It is completely obvious that i am allergic to gluten because if i eat anythin that isn't gluten free i get extremely sick again. I have even gotten sick from kissing my wife and daughter. I have read many threads on this site about what is and isn't safe to consume. Even though most people say many things that aren't labeled gluten free are safe, but that isnt the case for me. People said distilled viniger is safe because it has been distilled, but i get sick from it. Its seems to me that the only safe foods for me are the ones labeled gluten free. So now i need the tests, but the blood test simply is not an option as i spent at least 12 hours vomiting  in extreme pain and fever every time i eat anything not gluten free.  I would really appreciate any advice on how to get a diagnosis quickly.

[squirmingitch]

Distilled vinegar IS gluten-free, I assure you it is. I understand you are reacting to it & that's totally logical considering how damaged your gut apparently is from what all you've described. Vinegar is highly acid and your gut just can not take it right now. There are probably a lot of things your gut can't deal with at present.

I'm sorry but there just isn't any way for you to get a dx now that you have gone gluten free. You would HAVE to do the challenge. The shortest challenge would be 2 weeks of gluten eating to get an endoscopic biopsy. 

[Kurasz]

36 minutes ago, squirmingitch said:

Distilled vinegar IS gluten-free, I assure you it is. I understand you are reacting to it & that's totally logical considering how damaged your gut apparently is from what all you've described. Vinegar is highly acid and your gut just can not take it right now. There are probably a lot of things your gut can't deal with at present.

I'm sorry but there just isn't any way for you to get a dx now that you have gone gluten free. You would HAVE to do the challenge. The shortest challenge would be 2 weeks of gluten eating to get an endoscopic biopsy. 

Thanks for responding. Does every test for celiacs requires consuming gluten? I seriously think even one day of consuming Gluten could kill me. The last time i accidentally ate gluten my wife found me unconscious on the bathroom floor covered in vomit. The fever gets so bad that i get dizzy and faint. I start sweating profusely and get the chills really bad. the only way i can warm back up is to sit in the shower until i run out of hot water.

[squirmingitch]

You need to describe all this to the GI at your next appt. and take your wife along so she can help you remember things as well as corroborate. There have been cases of getting a dx w/o doing the challenge but it's really rare & depends on the doc. He could do a genetic test - that only rules out celiac if you don't have the genes but if you do have them then it's at least possible for you to have celiac. He will likely want to do an endoscopy but being gluten-free, it's not going to test positive HOWEVER the state of the damage can indicate celiac (among other things). He may dx you based on those things AND your response to a gluten free diet BUT that will take time. IOW, he's going to want to see your progress in 6 months, a year. Do another endoscopy, see how you gain weight, etc....

Another thing.... do you have your records? Get them if you don't. Did they check your vitamin & mineral levels? Were you low or deficient in anything? If they didn't then the GI should! Certain deficiencies there can indicate celiac.

To answer your question.... NO, at this point in time, we do not have a celiac test that does not require us to poison ourselves with gluten in order to find out.

[Kurasz]

23 minutes ago, squirmingitch said:

You need to describe all this to the GI at your next appt. and take your wife along so she can help you remember things as well as corroborate. There have been cases of getting a dx w/o doing the challenge but it's really rare & depends on the doc. He could do a genetic test - that only rules out celiac if you don't have the genes but if you do have them then it's at least possible for you to have celiac. He will likely want to do an endoscopy but being gluten-free, it's not going to test positive HOWEVER the state of the damage can indicate celiac (among other things). He may dx you based on those things AND your response to a gluten free diet BUT that will take time. IOW, he's going to want to see your progress in 6 months, a year. Do another endoscopy, see how you gain weight, etc....

Another thing.... do you have your records? Get them if you don't. Did they check your vitamin & mineral levels? Were you low or deficient in anything? If they didn't then the GI should! Certain deficiencies there can indicate celiac.

To answer your question.... NO, at this point in time, we do not have a celiac test that does not require us to poison ourselves with gluten in order to find out.

My GI does know all of my symptoms and he told me to stick with the gluten free diet. I haven't been able to see him in 2 months now because he is only in my area one day of each month. He seems very intelligent and actually listens to everything i say, unlike the otber drs i have seen. He was mad that the emergency room drs didn't test me for celiacs. He said the only thing abnormal on the blood work that they did do was my blood sugar. My blood sugar level was at 244 after 13 hours of vomiting and not consuming anything during that time except water, which came right back up. 

I have also noticed that my 2 1/2 year old daughter has been getting constipated and complaining about her tummy hurting every time she has a bowel movement. My daughter and wife are not gluten free, but they will be as soon as they eat the last of the non gluten free foods we had before we discovered my problem. I want to get my daughter tested while she is still consuming gluten. 2 of my 4 siblings also have severe abdominal pain and are going to get themselves tested before going gluten free. I assume that if they test positive, it may help me get diagnosed.

P.s. thank you so much for helping me. 

[squirmingitch]

YES! Get your daughter tested!!!!!!! And your wife. I am glad your siblings are listening to you!!! Yes, if they test positive then it will help your case. I too, am livid that they never thought to test you in the hospital. It's beyond shameful!!!! 

You got lucky getting a GI that seems to know what the heck is going on & is wise in celiac. For now, he would probably be willing to dx you as NCGS - non celiac gluten sensitive. 

You're more than welcome! That's what we're here for. I'm paying it forward plus I want people to know what happens & how to properly get tested.

Sigh. I am so upset with your hospital. It just makes you want to go in there & wring some necks! I am also very happy your wife figured it out. 

[Kurasz]

The emergency room drs insisted that i had chrones disease. I geuss they assumed that was the only thing that could give me those symptoms. Unfortunately, next week may be my last visit with this GI. Because of my situation, we are moving the day after my appointment to a small 30 acre farm that is 3 hours away. The land is certified organic and has never been sprayed or even fertilized. There is already an orchard there that will supply us with apples, prunes, pears, blueberries, raspberries, BlackBerries, strawberries and currants. We will be growing and canning all of our own food, and we are even going to grow sunflowers for cooking oil. We are also going to raise chickens. We are hoping that we will never need to go to a grocery store again.

[squirmingitch]

Ask your GI if he can recommend a celiac versed GI where your new home will be.

The farm sounds terrific!

How are you doing now? Have you gained any weight back yet? How long have you been gluten free? You read the Newbie 101 in the coping section right?

Bone broth is great for healing the gut.

[Kurasz]

14 hours ago, squirmingitch said:

Ask your GI if he can recommend a celiac versed GI where your new home will be.

The farm sounds terrific!

How are you doing now? Have you gained any weight back yet? How long have you been gluten free? You read the Newbie 101 in the coping section right?

Bone broth is great for healing the gut.

I feel like i got glutened again. I barely remember yesterday and my intestines are quivering. I'm wondering if i can get gluten from hamburgers. I haven't had anything that isnt on the safe list. In the last few days i have only eaten eggs, hamburgers wrapped in lettuce, gluten free pasta, pickles and olives. I had Velveeta cheese on the burgers. I'm wondering if i should go to the emergency room and get a blood test today?

I have been attempting to be gluten free for 2 1/2 months now, but somehow i keep getting poisoned. I'm wondering if i am get gluten from beef and dairy. I know cows eat wheat. Can a small trace like that actually poison me?

I haven't gained any weight back yet. I haven't lost any weight since attempting to be gluten free though. I'm really confused on what is happening.

[kareng]

17 minutes ago, Kurasz said:

I feel like i got glutened again. I barely remember yesterday and my intestines are quivering. I'm wondering if i can get gluten from hamburgers. I haven't had anything that isnt on the safe list. In the last few days i have only eaten eggs, hamburgers wrapped in lettuce, gluten free pasta, pickles and olives. I had Velveeta cheese on the burgers. I'm wondering if i should go to the emergency room and get a blood test today?

I have been attempting to be gluten free for 2 1/2 months now, but somehow i keep getting poisoned. I'm wondering if i am get gluten from beef and dairy. I know cows eat wheat. Can a small trace like that actually poison me?

I haven't gained any weight back yet. I haven't lost any weight since attempting to be gluten free though. I'm really confused on what is happening.

If all of this is homemade food, you should be fine (gluten free).  If you are eating at restaurants, you are likely not as gluten-free as you need to be to heal.  But I am not really sure gluten intolerance is your problem, just a symptom.

 

IF I had   "my stomach was enlarged and my colon shrunk. There was also some narrowing in my intestines", I would be eating a bland diet and pressing the doctor's to find out what is really wrong with me!  

[Kurasz]

13 minutes ago, kareng said:

If all of this is homemade food, you should be fine (gluten free).  If you are eating at restaurants, you are likely not as gluten-free as you need to be to heal.  But I am not really sure gluten intolerance is your problem, just a symptom.

 

IF I had   "my stomach was enlarged and my colon shrunk. There was also some narrowing in my intestines", I would be eating a bland diet and pressing the doctor's to find out what is really wrong with me!  

I am absolutely positive i am allergic to gluten, but not sure what is causing this problem. Squirmingitch thought i might be having problems with dairy and acidic foods because of the damage to my intestines. 

[kareng]

Gluten is very hard to digest, especially with a damaged system.  So is dairy and acid and fatty things.  That is why I said "bland diet".  But it doesn't really matter, one way or the other.  Those foods that  you listed, assuming homemade, are gluten-free. So gluten probably wasn't the culprit this time.

 

What concerns me is that you don't seem to understand the severity of your CT results.  If they are what you have stated, Celiac is the least of your worries.  If it were me, I would be pushing for an appointment, and endoscopy, colonoscopy, etc. 

[Kurasz]

27 minutes ago, kareng said:

Gluten is very hard to digest, especially with a damaged system.  So is dairy and acid and fatty things.  That is why I said "bland diet".  But it doesn't really matter, one way or the other.  Those foods that  you listed, assuming homemade, are gluten-free. So gluten probably wasn't the culprit this time.

 

What concerns me is that you don't seem to understand the severity of your CT results.  If they are what you have stated, Celiac is the least of your worries.  If it were me, I would be pushing for an appointment, and endoscopy, colonoscopy, etc. 

I have an appointment next week with my GI. 

There are a couple of other thing i want to mention.

When i go into a grocery store, if i go near the bread or flour isles, my eyes start burning and and i get a headache.

Also i went into a subway restraunt to repair some flooring a few weeks ago and my eyes started burning and within a half hour, i started vomiting. I called my boss and told him sorry, but i can't finish this job. I started feeling better shortly after leaving.

I haven't eaten at a restaurant in months. Everything i am eating is home made. Our house is not gluten free yet. I have read some articles that say my dishes should not be washed with other that had gluten. That hasn't been possible yet. I also have to make meals for my daughter that contain gluten. I notice that when i cook her pasta i get the same feeling as when i go in the bread isle at the store. My eyes burn and i start feeling dizzy. I try to thoroughly wash my hands any time i touch anything containing gluten, but with the brain fog, i tend to forget to wash my hands at times. I actually just made her a microwave Alfredo meal and my eyes are burning again. I really don't know what to do.