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

Back from ER


Washingtonmama

Recommended Posts

Washingtonmama Contributor

I got up today feeling horrible. Super tired, no energy at all, cold, weak. Took my hubby to his appointment. I had to go to the bathroom, a normal b.m., but with blood. An hour later I got off and on stabbing pains below my ribs to my belly button. No pattern to them at all. My upper abdominal area seems very noisy, and that's usually when the pain happens. CT scan was normal. Usually when I get glutened I get a nasty migraine and diaharreah, no stabbing pains. And I have no diaharreah now. I've never had this happen. Could this be gluten? Have any if you had these issues? I did start a part time job at a little store/RV park a month ago. We fry foods there, but I'm very careful not to touch my face and change clothes as soon as I walk in the door. I glutened myself a few times when I first started, but not in the past few weeks. I've been off work for 3 days so I can't see how I've been glutened. Could it be the exposure at my job? I hope not, I love working there!


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry you are sick.  I can only remind you that celiac disease is an autoimmune disease that is triggered by gluten (sets off an autoimmune response).  It can take days or weeks for antibodies to ramp up and then decrease after a gluten exposure.  Each time I have been accidentally glutened, my response (symptoms) vary.  It drives me crazy trying to determine if gluten is  the cause or if it is another illness.  Usually, it has been gluten, because I get better in a few months.  

Ennis-TX Grand Master

As mentioned with celiac it takes weeks for you antibodies to go back down, and your reactions to gluten can vary and change over time and also depends on the amount of CC you got and what form the gluten is in. Random thing that comes to my mind, you mentioned blood in your stool, this is a different sign, that along with the pain. I might suggest seeing if you can have a colonoscopy if you keep having this. There are other complications and AI issues that can develop alongside celiac. I had the blood issues for about a year on and off and ended up having Ulceratve Colitis diagnosed. For now keep a food diary and see if you find certain foods triggering this even gluten free ones. Keep a list on ones that seems to effect the blood in the stool.

cyclinglady Grand Master
5 hours ago, Ennis_TX said:

As mentioned with celiac it takes weeks for you antibodies to go back down, and your reactions to gluten can vary and change over time and also depends on the amount of CC you got and what form the gluten is in. Random thing that comes to my mind, you mentioned blood in your stool, this is a different sign, that along with the pain. I might suggest seeing if you can have a colonoscopy if you keep having this. There are other complications and AI issues that can develop alongside celiac. I had the blood issues for about a year on and off and ended up having Ulceratve Colitis diagnosed. For now keep a food diary and see if you find certain foods triggering this even gluten free ones. Keep a list on ones that seems to effect the blood in the stool.

So, true!!!!!

Washingtonmama Contributor
11 hours ago, cyclinglady said:

I am sorry you are sick.  I can only remind you that celiac disease is an autoimmune disease that is triggered by gluten (sets off an autoimmune response).  It can take days or weeks for antibodies to ramp up and then decrease after a gluten exposure.  Each time I have been accidentally glutened, my response (symptoms) vary.  It drives me crazy trying to determine if gluten is  the cause or if it is another illness.  Usually, it has been gluten, because I get better in a few months.  

I know that feeling, racking your brain trying to figure out what you are. It can be maddening! Even worse for you that your symptoms vary. Very frustrating. 

Washingtonmama Contributor
8 hours ago, Ennis_TX said:

As mentioned with celiac it takes weeks for you antibodies to go back down, and your reactions to gluten can vary and change over time and also depends on the amount of CC you got and what form the gluten is in. Random thing that comes to my mind, you mentioned blood in your stool, this is a different sign, that along with the pain. I might suggest seeing if you can have a colonoscopy if you keep having this. There are other complications and AI issues that can develop alongside celiac. I had the blood issues for about a year on and off and ended up having Ulceratve Colitis diagnosed. For now keep a food diary and see if you find certain foods triggering this even gluten free ones. Keep a list on ones that seems to effect the blood in the stool.

Celiac wasn't enough, your body had to throw in UC. Ugg. I will keep a good diary starting now. I never had this problem before, which is why I'm wondering if the constant expose to the cooking oil where I work is the problem. I did end up with the other symptom of being glutened, the worst migraine I've had in years. 

Washingtonmama Contributor
8 hours ago, Ennis_TX said:

As mentioned with celiac it takes weeks for you antibodies to go back down, and your reactions to gluten can vary and change over time and also depends on the amount of CC you got and what form the gluten is in. Random thing that comes to my mind, you mentioned blood in your stool, this is a different sign, that along with the pain. I might suggest seeing if you can have a colonoscopy if you keep having this. There are other complications and AI issues that can develop alongside celiac. I had the blood issues for about a year on and off and ended up having Ulceratve Colitis diagnosed. For now keep a food diary and see if you find certain foods triggering this even gluten free ones. Keep a list on ones that seems to effect the blood in the stool.

I forgot to ask if you have the off and on stabbing pains with your UC. 


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



Celiac.com Sponsor (A8-M):



Ennis-TX Grand Master
9 minutes ago, Washingtonmama said:

Celiac wasn't enough, your body had to throw in UC. Ugg. I will keep a good diary starting now. I never had this problem before, which is why I'm wondering if the constant expose to the cooking oil where I work is the problem. I did end up with the other symptom of being glutened, the worst migraine I've had in years. 

Yeah everyone has different trigger foods with UC, I for years thought the bloat, distention, and blood were from bad bacteria....It happened every time I ate more then like 1-2 figs, a few tsp of real sugars, rice, beans, starches. Pretty much any carb or sugar so I ate them in moderation for like a full year. Then in Feb. the doctor told me I had UC, seems those are my trigger foods.....Keto/Paleo diet was my change over blood and all that stopped after a week of removing all fruit, grains, and real sugar from my diet. >.< still get a flare up if I eat to many of some veggies. But protein and fats seem to be working for me.  Up a full 4lbs from my base weight a year ago, seems to be muscles to boot lol. Now for my current health issues -_- if not one thing it is another with this  body.  

With the UC I did have pains that felt better when I massaged them normally down low or up high seemed to follow the path of my large intestine.

Washingtonmama Contributor
2 hours ago, Ennis_TX said:

Yeah everyone has different trigger foods with UC, I for years thought the bloat, distention, and blood were from bad bacteria....It happened every time I ate more then like 1-2 figs, a few tsp of real sugars, rice, beans, starches. Pretty much any carb or sugar so I ate them in moderation for like a full year. Then in Feb. the doctor told me I had UC, seems those are my trigger foods.....Keto/Paleo diet was my change over blood and all that stopped after a week of removing all fruit, grains, and real sugar from my diet. >.< still get a flare up if I eat to many of some veggies. But protein and fats seem to be working for me.  Up a full 4lbs from my base weight a year ago, seems to be muscles to boot lol. Now for my current health issues -_- if not one thing it is another with this  body.  

With the UC I did have pains that felt better when I massaged them normally down low or up high seemed to follow the path of my large intestine.

Awesome you found your triggers! My niece is on the diet you mentioned. Keyto I  think. I fibd the pain follows before or after abdominal rumbling and moved down as the day passed. It def hurts way down low on the left when a bm is coming. If it keeps up Ill have my doc refer me to a GI. Thanks for your input. ?

Beverage Proficient

You say that you are involved in frying foods?  Is there any loose flour involved in that? Airborne flour gets into the nose which drains down to the stomach, so same as eating it.  Hope you get better soon, it is so very very frustrating trying to figure out where the gluten is coming from.

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - SamAlvi replied to SamAlvi's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      High TTG-IgG and Normal TTG-IgA

    2. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

  • Celiac.com Sponsor (A19):
  • Member Statistics

    • Total Members
      132,871
    • Most Online (within 30 mins)
      7,748

    Koyanna
    Newest Member
    Koyanna
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):
  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • SamAlvi
      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
×
×
  • 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.