Jump to content

  • 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

Unwilling to poison myself for the blood test

Kurasz

Recommended Posts

Kurasz Contributor
Kurasz
Posted

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.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

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 Contributor
Kurasz
Posted
  • Author
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 Veteran
squirmingitch
Posted

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.:wacko:

Kurasz Contributor
Kurasz
Posted
  • Author
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.:wacko:

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 Veteran
squirmingitch
Posted

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 Contributor
Kurasz
Posted
  • Author

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.

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

Celiac.com Sponsor (A8-M):


squirmingitch Veteran
squirmingitch
Posted

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 Contributor
Kurasz
Posted
  • Author
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 Grand Master
kareng
Posted
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 Contributor
Kurasz
Posted
  • Author
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 Grand Master
kareng
Posted

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 Contributor
Kurasz
Posted
  • Author
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. 

Archived

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

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


  • Member Statistics

    • Total Members
      131,856
    • Most Online (within 30 mins)
      7,748
    Sonya Haskin
    Newest Member
    Sonya Haskin
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      He is. Which makes everything even more difficult. I’m not a believer in “staying for the kids” but I have nowhere to go and it’s not just me, it’s me plus my babies. We live in a beautiful place, lots of land in the country and me and the kids love the place we’ve called home for their entire lives. But Im seeing that he’ll never change, that my kids deserve a happy healthy Momma, and that staying in this as is will be the early death of me. Then I look at the scars covering my entire body…this disease and the chronic stress I’ve been enduring for years that tell me I’m no longer beautiful and no one will ever look at me with interest again. I try self care, try to give myself grace so I can just start loving myself enough to gain strength but the slightest sparkle in my eye and skip in my step attracts his wrath and it all comes crashing ten fold. Life is just absolutely railing me from every single direction leaving me wanting to wave that white flag bc I don’t feel like there’s much hope no matter what happens. 
    • trents
      Celiac and dermatitis herpetiformis has taken Me from Me

      By trents · Posted

      Is this man the father of your children?
    • Jillian83
      Celiac and dermatitis herpetiformis has taken Me from Me

      By Jillian83 · Posted

      Hi, I was recently diagnosed with Celiac and dermatitis herpetiformis after years of suffering without answers. I lost my mind. I lost my job. I lost so much time. I lost Me. Conventional doctors are opulent come near me and the one who did sat across the room, misdiagnosed me, pumped me full of steroids which collapsed my entire hip for 6 months. So without answers I began my holistic journey. Fast forward a couple of years and still struggling with a mysterious whole body itchy, crawling “skin hell”, perfect teeth now deteriorating, thick hair now thinning rapidly and no more than a day or 2 at most relief….An acquaintance opened up a functional medicine practice. Cash only, I found a way. Within a month tests clearly showing my off the charts gluten allergy/sensitivity as well as the depletion of vital nutrients due to leaky gut and intestinal damage. dermatitis herpetiformis was more than likely what I was experiencing with my skin. I was happy. I thought this is easy, eat healthy Whole Foods, follow the diet restrictions and I finally get to heal and feel confident and like myself again very soon! 😔 Supplements are very pricey but I got them and began my healing. Which leads to the other major issue: not working, stay at home Mom of young kids, entirely financially dependent on my man of 7 plus years. He’s never been supportive of anything I’ve ever done or been thru. He controls everything. I’m not given much money ever at a time and when he does leave money it’s only enough to possibly get gas. His excuse is that I’ll spend it on other things. So my “allowance” is inconsistent and has conditions. He withholds money from me as punishment for anything he wants. Since being diagnosed, he’s gained a new control tactic to use as punishment. He now is in control of when I get to eat. He asked for proof of my diagnosis and diet bc he said I made it up just to be able to eat expensive organic foods. Then after I sent him my file from my doctor he then said she wasn’t a real doctor. 😡. I go days upon days starving, sometimes breaking down and eating things I shouldn’t bc I’m so sick then I pay horribly while he gets annoyed and angry bc I’m not keeping up with all the duties I’m supposed to be doing. His abuse turns full on when I’m down and it’s in these desperate times when I need his support and care the most that I’m punished with silence, being starved, ignored, belittled. He will create more of a mess just bc I’m unable to get up and clean so that when I am better, I’m so overwhelmed with chores to catch up that the stress causes me to go right back into a flare from hell and the cycle repeats. I’m punished for being sick. I’m belittled for starving and asking for healthy clean water. I’m purposely left out of his life. He won’t even tell me he’s going to the grocery or to get dinner bc he doesn’t want me to ask him for anything. I have no one. I have nothing. Im not better. My supplements ran out and I desperately need Vitamin D3 and a methylated B complex at the very minimal just to function….he stares at me blankly…no, a slight smirk, no words. He’s happiest when im miserable and I am miserable.  this is so long and im condensing as much as I can but this situation is so complicated and disgusting. And it’s currently my life. The “IT” girl, the healthy, beautiful, perfect skin, perfect teeth, thick and curly locks for days, creative and talented IT girl….now I won’t even leave this house bc Im ashamed of what this has dont to my body, my skin. Im disgusted. The stress is keeping me from healing and I think he knows that and that’s why he continues to keep me in that state. He doesn’t want me confident or successful. He doesn’t want me healed and healthy bc then how would he put the blame of all his problems on me? This journey has been hell and I’ve been in Hell before. I’ve been killed by an ex, I’ve been raped, robbed, held hostage, abused beyond nightmares but the cruelty I’ve experienced from him bc of this disease is the coldest I’ve ever experienced. I’ve wanted to give up. Starving and in tears, desperate…I found a local food pantry in our small town so I reached out just saying I had Celiac and was on hard times. This woman is blessing me daily with prepared gluten free meals, donations, educational info, people who know this disease and how they manage life and the blessings just keep coming. But it’s overwhelming and I feel like I don’t deserve it at all. He just glared and I know he’s going to sabotage it somehow. I don’t even know what to do anymore. I’m so broken and just want peace and healing. 
    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.