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

Saw The Doctor


pewpewlasers

Recommended Posts

pewpewlasers Rookie

So I saw a new doctor because I just got health insurance and I told her that I am on a gluten free diet and all of my symptoms dissapeared within a month of starting. I have been gluten free for over a year now and the last three time I have been glutened I have had severe intestinal cramping. She is in the process of getting a referral to a gastroenterologist. I told her I am very afraid of getting tested because that means I would have to eat gluten again and my symptoms are very severe.

She said to just talk to the gastro and see what they want to do. My Mom has celiac and I also have a family member that has Crohns.

She ordered a celiac blood test among other things but what is the blood test going to say if I haven't been eating gluten?

Shortly after seeing this new doctor I got glutened. At least I think I did. I have no idea what it was that caused it but it woke me up in the middle of the night with severe intestinal cramps. By severe I mean the worst pain I have felt in my life. It was like my body was trying to make balloon animals out of my intestines. The pain was so severe it made me nauseous. I was also painfully bloated. I don't know if it was the pain for just to add to all of this, but I felt extremely hot and was sweaty.

My whole stomach area was sensitive to the touch and I nearly felt like I was dying. I had diarrhea that night up until the next day.

I was finally able to get back to sleep after cringing in pain on the toilet for over an hour. Now what worries me is that twice now I have had visable mucus in my stool, and it wasn't diarrhea either. I've looked up the causes of this and it scares me to death. I read that the three major causes are irritable bowel disease, crohn's disease, and ulcerative colitis.

I don't know if I should call my doctor about this episode or wait to see the gastro or wait until I see my doctor when I go into discuss my blood results which isn't until November 2nd.

I'm scared and don't know what is wrong. Do any of you have problems like this from being glutened?

I wasn't going to do the test for celiac because my symptoms went away after being gluten free, but these episodes have become more frequent and I'm not sure what it is that I ate that caused it. The weird thing about the episode the other night is that I didn't eat anything that I had problems from before. The cramping is totally new to me and a lot different from when I would just get stomach pains.

I just wish it didn't take so long to figure out what this all means.

I think I just want to know right now is if there are other people with episodes like that and do you know what causes it?


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



Celiac.com Sponsor (A8-M):



pewpewlasers Rookie

Just got a call with the go ahead to make an appointment with the gastro. Hopefully I can get in soon!

mushroom Proficient

Hi, and welcome to the forum, Pewpewiasers.

You may be surprised (relieved?) to know that you are not the only one who experiences such episodes. It happened to me exactly one week ago. I had been searching the stores for a bread I did not have to bake myself which contains neither soy flour nor potato starch, and found a loaf of buckwheat/corn bread. Now, I am intolerant of corn in the U.S. but usually the corn here doesn't bother me. So I had two slices of toast for breakfast. That night I had an experience almost exactly like yours. I was awakened in the middle of the night with pain which felt like a knife was being stabbed under my breastbone, and the bloating and pressure were incredible. The gas could only be burped up. I was in so much pain that I ignored the heat and sweating and the ringing in the ears (well, I have tinnitus now, anyway) (and was not even really aware of it until later), which was a mistake, because normally this is a signal that I am going to faint, which I promptly did whilst sitting on the toilet :o Came to to find myself in a hot, sweaty heap on the cold tiles of the bathroom floor, wedged in under the vanity, with my legs wrapped around the toilet :lol: and it was a while before I could get up :(

Now, don't think for a second that this is the first time I have fainted. I used to specialize in it before quitting gluten (and most corn). I do think it was the corn that caused me to bloat. It took me a long while to figure it out post gluten. I would normally faint after eating at Mexican restaurants so it was never clear to me if it was the corn or the gluten, but this was a clear case of corn for me. And I have done it after popcorn and corn chips eaten to excess, in retrospect.

I would suspect you were not glutened but that you have some other food intolerance you are not presently aware of which caused this episode of bloating. I cannot comment on the mucous. I too have had occasional mucous in the stool but it is only ever occasional and has not occurred lately. I have never consulted a doctor about it.

I am sorry you had one of these alarming episodes and hope that it is the last for you. Can you think back to what you ate that day and see if you can identify some other culprit than gluten? Normally, for most of us, glutening symptoms last longer than that, and I would suspect that you probably did not ingest gluten. But you do need to find out what it was :rolleyes:

pewpewlasers Rookie

I am glad that I am not alone. I right away have noticed that is very different from being glutened. When glutened, my stomach area hurts (right under the breast bone), like being stabbed over and over. Also, when I am gluttened I am normally sick for about a week and unable to eat anything without running to the toilet five minutes later.

This pain is very low, I guess it would be in the lower intestine area. I can't recall being so bloated during a gluten attack but this was really bad. The pain radiated into my lower back and it was just the worst.

That day/night my boyfriend and I had a friend over for dinner and we made burgers with franks. The burgers and franks seemed safe. I read the ingredients thoroughly and they seemed okay. The franks contained milk and soy but I don't normally have problems from those ingredients. I also had a gluten free bun made with tapicoca rice. I had an apple cider with our dinner and we went out for drinks and the drinks were stuff I normally have when we go out.

After we went out we decided to grab some mexican food and I got my usual which is rolled tacos made with corn toritillas. I've eaten these rolled tacos from the same place several times before and never had a reaction from them so I am stumped.

It's interesting that you mentioned fainting. I spoke with my doctor about having episodes where I am very close to fainting. My vision starts to black out and I get really dizzy. Most of the time I just have to lean against something and collect myself. Some of the blood work I am having done is looking into seeing if that may be caused my anemia or something to do with glucose.

I think when I see the gastro I should ask for some sort of allergy test. When I was a child I was lactose intolerant but I seemed to grow out of it. Unfortunately, I haven't been able to pinpoint what causes these episodes of severe stomach cramping.

I wish there was a magic button I could press that would tell me the answers, but instead I have to wait and wonder what the hell is wrong with me and feel like my body is defective.

mushroom Proficient

I find it interesting that you went out and had corn tortillas that night :huh: A few of us here have bloating reactions to corn (though you and I are the most extreme I have heard of). I would just add that corn does not always affect me this way; that was why it was so difficult to pinpoint it as the source of my problems. Sometimes it seems to depend on the digestive process, what else was combined with it (or not), where it was absorbed, etc. My husband has had anaphylactic response to raw fish; the allergist told him he may or may not have the same response again, that it depended on where it was absorbed into the blood stream from the digestive tract (and this was way pre-celiac days before I knew about leaky guts and stuff like that to ask more questions--and I don't really understand it anyway).

Anyway, I would suggest that you treat corn as possibly suspect for you and be aware of any bloating episodes when you eat it.

pewpewlasers Rookie

Maybe I'll have to test this out and eat some corn and see if I have a reaction. It also made me think back to the first time I had a reaction like this and I had corn tortilla chips from a resturaunt that day. However, the reactions don't happen right away like they do when I eat something bad. Normally, when I am glutened I can tell within 15 minutes something is not right.

I'm just not really sure because I usually make chicken soft tacos with corn toritillas once a week and have corn chips and I feel fine.

Although, I do understand getting different reactions because I've been there before.

Ahorsesoul Enthusiast
which was a mistake, because normally this is a signal that I am going to faint, which I promptly did whilst sitting on the toilet :o Came to to find myself in a hot, sweaty heap on the cold tiles of the bathroom floor, wedged in under the vanity, with my legs wrapped around the toilet :lol: and it was a while before I could get up :(

Oh mushroom, you have made my day! I've been in the same place so many times before I went gluten free!


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



Celiac.com Sponsor (A8-M):



bahrbdoll Rookie
So I saw a new doctor because I just got health insurance and I told her that I am on a gluten free diet and all of my symptoms dissapeared within a month of starting. I have been gluten free for over a year now and the last three time I have been glutened I have had severe intestinal cramping. She is in the process of getting a referral to a gastroenterologist. I told her I am very afraid of getting tested because that means I would have to eat gluten again and my symptoms are very severe.

She said to just talk to the gastro and see what they want to do. My Mom has celiac and I also have a family member that has Crohns.

She ordered a celiac blood test among other things but what is the blood test going to say if I haven't been eating gluten?

Shortly after seeing this new doctor I got glutened. At least I think I did. I have no idea what it was that caused it but it woke me up in the middle of the night with severe intestinal cramps. By severe I mean the worst pain I have felt in my life. It was like my body was trying to make balloon animals out of my intestines. The pain was so severe it made me nauseous. I was also painfully bloated. I don't know if it was the pain for just to add to all of this, but I felt extremely hot and was sweaty.

My whole stomach area was sensitive to the touch and I nearly felt like I was dying. I had diarrhea that night up until the next day.

I was finally able to get back to sleep after cringing in pain on the toilet for over an hour. Now what worries me is that twice now I have had visable mucus in my stool, and it wasn't diarrhea either. I've looked up the causes of this and it scares me to death. I read that the three major causes are irritable bowel disease, crohn's disease, and ulcerative colitis.

I don't know if I should call my doctor about this episode or wait to see the gastro or wait until I see my doctor when I go into discuss my blood results which isn't until November 2nd.

I'm scared and don't know what is wrong. Do any of you have problems like this from being glutened?

I wasn't going to do the test for celiac because my symptoms went away after being gluten free, but these episodes have become more frequent and I'm not sure what it is that I ate that caused it. The weird thing about the episode the other night is that I didn't eat anything that I had problems from before. The cramping is totally new to me and a lot different from when I would just get stomach pains.

I just wish it didn't take so long to figure out what this all means.

I think I just want to know right now is if there are other people with episodes like that and do you know what causes it?

Okay, I really don't want to freak you out but my suggestion to you would be- if that ever happens to you again GO TO THE ER IMMEDIATLY- even if it's just incase. That happened to me Exactly! I had a major bowel obstruction, almost died in surgery and after, the Dr. told me that if they hadn't figured out what was wrong w/ me within the next 24hrs. I wouldn't had made it- This had happened before and I put up w/it, this time was No different the only reason why I went this time was because I was pregnant. Better safe than sorry!

pewpewlasers Rookie
Okay, I really don't want to freak you out but my suggestion to you would be- if that ever happens to you again GO TO THE ER IMMEDIATLY- even if it's just incase. That happened to me Exactly! I had a major bowel obstruction, almost died in surgery and after, the Dr. told me that if they hadn't figured out what was wrong w/ me within the next 24hrs. I wouldn't had made it- This had happened before and I put up w/it, this time was No different the only reason why I went this time was because I was pregnant. Better safe than sorry!

I was seriously considering it. I didn't think that I would be able to make it to the hospital because I couldn't get off the toilet.

I have an appointment if the gastro on Friday. Maybe they will order ultrasounds.

Pretty scary but good advice.

pewpewlasers Rookie
Okay, I really don't want to freak you out but my suggestion to you would be- if that ever happens to you again GO TO THE ER IMMEDIATLY- even if it's just incase. That happened to me Exactly! I had a major bowel obstruction, almost died in surgery and after, the Dr. told me that if they hadn't figured out what was wrong w/ me within the next 24hrs. I wouldn't had made it- This had happened before and I put up w/it, this time was No different the only reason why I went this time was because I was pregnant. Better safe than sorry!

Now I am really scared. I looked up on several websites about bowel obstructions and I have every single symptom. Minus not being able to poop. This happened Saturday and I still have a lower backache with pain in my lower intestinal region. Thankfully it isn't severe but it is noticable. I am going to call the doctor first thing in the morning to see if I need to go in.

nora-n Rookie

About testing for celiac, an episode of getting glutened or two do not make enough antibodies to cause a positive celiac blood test.

(only the experimental freshly activated T cell test will be positive. it is used in research now)

pewpewlasers Rookie
About testing for celiac, an episode of getting glutened or two do not make enough antibodies to cause a positive celiac blood test.

(only the experimental freshly activated T cell test will be positive. it is used in research now)

Yes, I understand that. The doctor however, does not. I had to explain to her that you need to eat gluten for a while in order for the antibodies to show up. Yet she is still running the test anyways?

pewpewlasers Rookie

I saw the gastro today and he wants an endoscopy without a gluten challenge. It seems kind of pointless to me to go looking for damage from gluten if I have been gluten free for over a year.

He said we will just do the endoscopy and take it from there. He said if it is normal he might consider doing another one but do a gluten challenge. He said he doesn't want to torture me if he can see anything now.

He brought up IBS but I think he is playing it safe and not saying anything until he runs tests.

bugstabber Rookie
I saw the gastro today and he wants an endoscopy without a gluten challenge. It seems kind of pointless to me to go looking for damage from gluten if I have been gluten free for over a year.

He said we will just do the endoscopy and take it from there. He said if it is normal he might consider doing another one but do a gluten challenge. He said he doesn't want to torture me if he can see anything now.

He brought up IBS but I think he is playing it safe and not saying anything until he runs tests.

I think I read somewhere that mucous in the stool is a symptom of Celiac disease.

StacyA Enthusiast

Even though you have celiac's disease - not every symptom in your life will be related to exposure to gluten. If someone has 'the worst pain of their life', then the ER is called for. Someone with diabetes can still have a stroke, someone with asthma can still have a heart attack, and someone with celiac's can still have a bowel obstruction or kidney stone or gallbladder attack. Celiac's and gluten-free living may seem to become a large part of someone's life, but there are other things (and ailments) in life beyond celiac's. I had a client with chronic arthritis pain ignore foot pain until I told her to get it checked out, and she found out she had a fracture.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,189
    • Most Online (within 30 mins)
      7,748

    Eric bell
    Newest Member
    Eric bell
    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

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...