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

Sibo, histamine intolerance??


lydialoo

Recommended Posts

lydialoo Rookie

Hey! 

So it's been a while since i was celiac diagnosed and I have been very strictly gluten free and low fodmap. 

Yet I'm still having symptoms of bloating, nausea, awful migraines (they only get better when i vomit lots), swollen tongue and face, a tight feeling in my throat, awful depression and just not feeling myself, dull discomfort in my stomach, extreme fatigue. 

I'm taking oregano oil, garlic and ginger root and eating essentially only meat and some veg and fruits because im scared to eat anything else.

I was taking an abundance of vitamins as I thought this was due to vitamin deficiencies but that honestly made no difference at all! So I've cut back as I think if anything it was adding to my nausea.

Anyways any advice please, does this sound like sibo or something worse? I genuinely feel like I'm slowly dying, It's been over a year and I'm not improving. I am struggglinggggg! I am also incredibly poor and just about scraping by as I'm self employed and a dancer so I can't really work in this condition.


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



Celiac.com Sponsor (A8-M):



knitty kitty Grand Master

Hi, @lydialoo,

How long have you been taking the oregano oil, ginger, and garlic?  

Oregano oil has the side effects of nausea, vomiting and gastrointestinal symptoms when too much is taken.  

Ginger has side effects of mouth and throat irritation, stomach upset, and diarrhea.

Garlic can cause heartburn, gas, and diarrhea.  

You would be better off taking the vitamins.  How long have you discontinued the vitamins?  Diarrhea and vomiting can seriously deplete your vitamins and lower your absorption from foods.  I'm concerned you may be vitamin deficient now.  

Not a doctor, but discontinue the oregano oil, garlic and ginger and see if there's any improvement!

lydialoo Rookie

Hey I've been taking it about 3 weeks and I've seen some improvement on it. I do not intend to exceed 6 weeks max.  All the symptoms I mentioned are things I was struggling with before beginning the herbal treatment. 

I will take your advice and get back taking vitamins. 

I have also been trying intermittent fasting to let my gut rest and have noticed I feel really good when fasted.. I'm trying not to do this too often though because then I really struggle getting my calories in and I'm already losing weight.

knitty kitty Grand Master

Would you tell me what exactly are you eating now?   Meat, veggies, fruit, low fodmap, but which ones?  Dairy?  

Which vitamins were you taking? And how much (dosage on label)?  When (every day, sporadically)?  How long?  Do any contain thiamine mononitrate?

I understand what you're going through.  There's nothing worse than feeling yourself dying.  

When we cut out gluten, we cut out the vitamins that are added to gluten containing foods to replace those lost in processing.  Gluten free facsimile foods are not required to have vitamins added to them.  We need to take vitamins to ensure we're getting enough from our gluten free diet and to compensate for malabsorption because our small intestine is damaged.  It's not unusual to have subclinical deficiencies in many vitamins and minerals.  Blood levels may be within normal range, but deficiencies happen inside the cells where they are actually used.  Blood is just a transport and distribution system.  

The B Complex vitamins are water soluble and easily lost when we have vomiting and diarrhea, especially if these go on longer than a week.  The B Complex vitamins cannot be stored for long.  Thiamine deficiency can occur in as little as three days.  Thiamine deficiency can cause gastrointestinal symptoms (Gastrointestinal Beriberi), weight loss, fatigue, neuropathy, migraines, depression and dissociation.  Deficiency in Niacin Vitamin B 3 can cause diarrhea, irritability, depression and apathy.  Deficiency in Cobalamine B12 can cause diarrhea, anemia, depression, and a swollen red tongue.  Pyridoxine B6 deficiency can cause a swollen tongue, anemia,  depression, and neuropathy.  The eight B vitamins work together and affect how we feel physically and mentally.  

Are you staying hydrated?

lydialoo Rookie
14 hours ago, knitty kitty said:

Would you tell me what exactly are you eating now?   Meat, veggies, fruit, low fodmap, but which ones?  Dairy?  

Which vitamins were you taking? And how much (dosage on label)?  When (every day, sporadically)?  How long?  Do any contain thiamine mononitrate?

I understand what you're going through.  There's nothing worse than feeling yourself dying.  

When we cut out gluten, we cut out the vitamins that are added to gluten containing foods to replace those lost in processing.  Gluten free facsimile foods are not required to have vitamins added to them.  We need to take vitamins to ensure we're getting enough from our gluten free diet and to compensate for malabsorption because our small intestine is damaged.  It's not unusual to have subclinical deficiencies in many vitamins and minerals.  Blood levels may be within normal range, but deficiencies happen inside the cells where they are actually used.  Blood is just a transport and distribution system.  

The B Complex vitamins are water soluble and easily lost when we have vomiting and diarrhea, especially if these go on longer than a week.  The B Complex vitamins cannot be stored for long.  Thiamine deficiency can occur in as little as three days.  Thiamine deficiency can cause gastrointestinal symptoms (Gastrointestinal Beriberi), weight loss, fatigue, neuropathy, migraines, depression and dissociation.  Deficiency in Niacin Vitamin B 3 can cause diarrhea, irritability, depression and apathy.  Deficiency in Cobalamine B12 can cause diarrhea, anemia, depression, and a swollen red tongue.  Pyridoxine B6 deficiency can cause a swollen tongue, anemia,  depression, and neuropathy.  The eight B vitamins work together and affect how we feel physically and mentally.  

Are you staying hydrated?

Thankyou so so much for your detailed response!!

I am eating a lot of meat and veg, avoiding carbs in fear of sibo (this is not a long term diet). I'm eating meals like lamb shoulder braise with lots of carrot and celery and bone broth. I eat a lot of Avocado, dark leafy greens and things. I do eat eggs as they don't seem inflammatory for me. I am not having dairy or Soy and have also noticed that other grains did cause me to feel more constipated so I've cut them out for now.

In terms of suppliments do you have any specific brands you would recommend? I did suspect my thiamine to be low but the supplement I was taking just didn't have any impact on me after taking about 500mg daily for 2 months. I was also taking floradix iron complex which did seem to help with dizziness. There were many other vitamins and suppliments I have tried but to little avail and I just became extremely exhausted from it (and poor haha). 

Hydration wise I'm drinking lots of herbal teas and lots of water. I do find that I'm peeing A LOT which I'm assuming is my body trying to flush out toxins?

 

  • 2 months later...
knitty kitty Grand Master

@lydialoo,

I like Life Extension Benfotiamine.  What was the brand and form of Thiamine you took that didn't work?  Did you take a B Complex with it?  Did you take Magnesium?  Thiamine needs magnesium to function properly.  Sometimes doses higher than 500 mg daily is required, depending on the form of Thiamine.

Keep in mind that all eight essential B vitamins are water soluble.  Some herbal teas are diuretic (they make you per more), which means you are losing your water soluble B vitamins.  Some herbal teas contain chemicals that break thiamine apart so it cannot be used by the body.  

A good rule of thumb is to drink a glass of water ( about 8oz. ) every time you go to the bathroom.  

So glad you're feeling better!

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,524
    • Most Online (within 30 mins)
      7,748

    oahulover15
    Newest Member
    oahulover15
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.5k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • BoiseNic
      Ya I used to react to iodine, but it doesn't bother me anymore after strict adherence to a gluten-free diet for many years now. I am happy to report that for the first time ever in my life, a probiotic formula is not making me break out, but actually seems to be helping. The strains in this formula have been specifically tested to help with skin issues. It is gluten and dairy free also. 
    • knitty kitty
      @Whyz, I take a combination of Thiamin (Benfotiamin), B12 Cobalamine and Pyridoxine B6 for my pain and headaches.  Really works well without hurting the digestive tract.  Riboflavin B2 also helps with migraines.  Most newly diagnosed people have vitamin and mineral deficiencies.  Check with your doctor and nutritionist.   If you follow the updated gluten challenge guidelines, you can wait until two weeks (minimum) before your appointment, then eat lots of gluten, like six slices of gluten containing bread or "name your poison".   Here's the Updated Gluten Challenge Guidelines: Recommended intake of gluten should be increased to 10 grams of gluten per day for at least two weeks. Or longer. While three grams of gluten will begin the immune response, ten grams of gluten is needed to get antibody levels up to where they can be measured in antibody tests and changes can be seen in the small intestine.   Keep in mind that there are different amounts of gluten in different kinds of bread and gluten containing foods.  Pizza crust and breads that are thick and chewy contain more gluten than things like cake and cookies.   References: https://www.beyondceliac.org/celiac-disease/the-gluten-challenge/ And... Evaluating Responses to Gluten Challenge: A Randomized, Double-Blind, 2-Dose Gluten Challenge Trial https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7878429/?report=reader  "In our study, limited changes in Vh:celiac disease (villi height vs crypt depth - aka damage to the small intestine)  following 14-day challenge with 3 g of gluten were observed, in accordance with Sarna et al.  While the 3 g dose was sufficient to initiate an immune response, as detected by several biomarkers such as IL-2, the 10 g dose was required for enteropathy within the study time frame. Based on our data, we would suggest that gluten challenge should be conducted over longer durations and/or using doses of gluten of ≥ 3 g/day to ensure sufficient histological change can be induced." Keep us posted on your progress!
    • Scott Adams
      I don't believe that existing life insurance policies require such notifications--health checks are typically done before such policies are obtained. I believe it would primarily affect any new policy you get, and perhaps any policy renewal.
    • Scott Adams
      You could go gluten-free now, and then start eating lots of gluten for at least 2 weeks before your endoscopy--just be sure to tell your doctor about this beforehand. If your symptoms go away on a gluten-free diet, it is further evidence of celiac disease and/or non-celiac gluten sensitivity.  Approximately 10x more people have non-celiac gluten sensitivity than have celiac disease, but there isn’t yet a test for NCGS. If your symptoms go away on a gluten-free diet it would likely signal NCGS.  
    • JA917
      If I'm not mistaken, you need to count by the grams of GLUTEN, not the gram weight of the bread.  So, instead of counting each slice of bread as 35 grams, it would be counted as 2 grams, so that's why the recommendation is 5 slices a day = 10 grams.  One of the moderators can correct me if I'm wrong on that!  
×
×
  • Create New...