Jump to content
  • 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):

Is It Possible for a person...


Dawn-Ambrose

Recommended Posts

Dawn-Ambrose Rookie

To be intolerant of so many different foods?

Gluten (I.e wheat, barley, rye). In regards to this I have a family history of Celiac disease (brother and mother) and apparently had to have gluten free baby food when I was a baby because I could not tolerate the gluten based formulas/foods. I am not dignosed with celiac disease though (as far as I'm aware..i only found about needing gluten free foods as baby from reading a few of my medical notes, but not all of them. Apparenlty I was underweight and being sick. They put me on gluten free food and I was fine).

Dairy...cheese seems to be ok, cream is fine if i dont over do it, butter is fine if I dont over do it, milk makes me flatulant and will almost go straight through me if I drink it.

Coffee....straight through/gut ache/headache.

Oats....straight through.

Sugar...Makes me irritable and hungry

Soya...straight through again

Artifical sweeteners...Migraine

Fruit....can tend to irritate my IBS but it depends on what it is.


Im basically reduced to just eating meat, fish, seafood, limited fruits, limited amount of nuts (too many give me jip but they are ok in moderation), some green vegetables and only drinking water.

Could I have another issue causing my loss of bowel control, pale colour stools (which apparently float) or can a person really be intolerant to all the foods listed above at the same time?

Don't tell me to see a dr. I have long term health issues in the form of fatigue, brain fog, feeling generally ill, bloating, loss of bowel control, stomach pain, pale stools, loss of bowel control etc which they just keep putting down to anxiety and depression. As this has been writen on my medical records they won't take my symptoms seriously even though they are often crippling. I did ask about celiac due to my history and the family history but the dr just laughed at me. One did do a blood test whilst I was on a gluten free diet a few years ago but it was negative. I did go back to gluten after that but am now back off gluten again (for 4 weeks now ive been gluten free) and whilst Ive had improvements in symptoms such as fagitue, brain fog, bloating, acid reflux etc I still get some loss of bowel control especially after drinking coffee or milk.

 

Im just looking for a resolution to my symptoms. Something is making me feel really ill and has been for years. I still suspect gluten as its only been a month since i stopped eating it again and it really does seem to knock me about a lot (I found out about my gluten free need for baby food after i started suspecting gluten to be an issue) but I cant get anyone or the drs to take me seriously because i was given a mental health label for my symptoms.

 

Its gotten to the point im considering going to the CAB as health services keep trying to give me support for a bunch of symptoms i dont have such as beating myself up, self loathing, constant melancholy (not that im feeling happy with my life right now but i wouldnt say i was constantly low for no reason...i just need to change things so my life is better), or for anxiety im not experiencing (such as when i get diarrhea).

 

I also feel feverish a lot and get muscle and sometimes joint pain (more muscle than joint).

I seem to be sensitive to so many differnt foods, I just don't know what to do with my gut or how to get a second opinon whilst avoiding the NHS. Its been 20 years, if they wont listen to me in that time they are not going to so its obviously time to do or see someone else...but whom and/or what?

 

Any suggestions please, im at my whits end...


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I am sorry that you are struggling with this!  With a family history of celiac disease, you have a strong chance of being celiac yourself.  All celiac testing requires you to be on a gluten diet for 8 to 12 weeks.  So, you seem to have two choices.  Go back on gluten for that period of time and push for celiac testing or remain gluten free for life.  Healing can take months to years based on the individual patient and their set of symptoms and collateral damage.  Yes, all those other food intolerances can be related to celiac disease.  

I am surprised that even with a negative blood test, your doctor did not order an endoscopy with two immediate family members who are diagnosed. 

I am in the US.  Let's hope that some fellow U.K. Members can offer advice about medical care.  Hang in there.  

tessa25 Rising Star

Next time your up for 12 weeks of daily gluten eating, as cyclinglady mentions, sign up at walkinlab.com, and order your own celiac comprehensive blood test for $298 after the 12 weeks. It's not covered by insurance. But it is the full celiac panel including TTG IGA and IGG, DGP IGA and IGG, IGA, EMA. Head to the nearest Labcorp for the blood draw. You'll get results in a few days, no docs required. If it comes up positive you can give it to your least annoying gastroenterologist and get the endoscopy.

 

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. - knitty kitty replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    2. - glucel replied to glucel's topic in Super Sensitive People
      17

      iron digestibility

    3. - Scott Adams commented on Scott Adams's article in Latest Research
      3

      New Research Reveals How Antibody Genes May Shape the Immune Response in Celiac Disease

    4. - knitty kitty replied to Bogger's topic in Related Issues & Disorders
      6

      Osteoporosis: Does the body start rebuilding bones after starting a gluten-free diet?

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

    • Total Members
      134,003
    • Most Online (within 30 mins)
      10,442

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

    • There are no registered users currently online
  • Upcoming Events

  • Posts

    • knitty kitty
      @glucel,  There's a strong correlation between thiamine deficiency, hypoxia, and insomnia.  Thiamine is needed to help red blood cells carry oxygen.  In thiamine deficiency, hypoxia (lack of oxygen in tissues) occurs, and this can result in insomnia. Hypoxia causes systemic inflammation, increases inflammatory markers, and is associated with cardiovascular events.  Curiously, thiamine deficiency is correlated with excessive daytime sleepiness and oversleeping.   I found a combination of Tryptophan, Pyridoxine B 6, magnesium, and L-theanine works very well for inducing sleep.  Sometimes, I add Passion Flower Extract and/or Sweet Melissa.  There's no side effects the next morning with Passion Flower, it just induces sleepiness.  Sweet Melissa is groovy, and has anti-inflammatory effects on the digestive system.   I prefer to take 250 mg Benfotiamine and 100 mg Thiamine TTFD in the mornings and another dose of Benfotiamine at lunch.  I try not to take any thiamine after four p.m. because it keeps my brain so energized and wanting to think... Oh, I do take a combination of another form of thiamine (sulbutiamine), Pyridoxine and Cobalamine for a pain reliever sometimes, but I can sleep after taking that.  But thiamine does help regulate circadian rhythm.   Make sure you're getting Omega Three fats! They'll help you satisfy that late night carb craving with fewer carbs.  Flaxseed oil, olive oil, sunflower seed oil.  Nuts and nut butters, like walnuts and cashews, are good, too, if you can tolerate them.    Try taking the 100mg thiamine HCl before your aerobics and see if there's a difference.  Sweet dreams! References: Network Pharmacology Analysis of the Potential Pharmacological Mechanism of a Sleep Cocktail. ......(Skip to Section Four) https://pmc.ncbi.nlm.nih.gov/articles/PMC11201840/ Effects of Melissa officinalis Phytosome on Sleep Quality: Results of a Prospective, Double-Blind, Placebo-Controlled, and Cross-Over Study https://pubmed.ncbi.nlm.nih.gov/39683592/
    • glucel
      Thanks to everybody for your help. I reread the dr's notes from the biopsy procedure and it seems I had worse than atrofied villi. It was termed flattened mucosa. So while iron ferratin levels are normal my bet is, as kitty alluded to, iron not getting into cells. I have dr appointment next mo but don't hold out a lot of hope, There is strong correlation of low red blood cells and insomnia so at least I finally solved that one after few yrs of being mislead. I intend to take stop taking 100 mg b1 at noon time and start 150 mg benfotiamin. I may or may not add the the 100 mg b1evening meal. BTW, last night had 1/3 lb beef. potato then 2 bowls cereal and an apple later in the eve. I generally do my areobics before supper so maybe that contributes to the hunger.  
    • knitty kitty
      I have osteoporosis and have crushed three vertebrae.  I supplement with Lysine, Tryptophan, threonine, calcium, Boron, Vitamins D, A, and K, and the B vitamins (folate, B12, and Thiamine B1 especially for bone health).   I tried Fosomax, but it tore up my insides.  I prefer the supplements.  I feel better and my bones feel stronger.   References: A composite protein enriched with threonine, lysine, and tryptophan improves osteoporosis by modulating the composition and metabolism of the gut microbiota https://pubmed.ncbi.nlm.nih.gov/41915427/
    • knitty kitty
      @Aileen Cregan, I was put on high blood pressure medication, too. But I was able to correct my high blood pressure by supplementing with Thiamine Vitamin B 1.  I am no longer on high blood pressure medication.  I feel much better without the medication. I continue to supplement Thiamine in the form Benfotiamine.   The particular high blood pressure medication I took was Norvasc (amlodipine), which causes thiamine deficiency by blocking thiamine transporters so that thiamine cannot enter cells.  Benfotiamine can get into cells by merging with the cell membrane, thus bypassing nonfunctional thiamine transporters.   Indapamide also blocks thiamine transporters! The use of this type of medications that block thiamine precipitated Wernickes Encephalopathy.  My doctors did not recognize the connection to Thiamine deficiency.  I nearly died.   Talk to your doctor and dietician about supplementing with Benfotiamine, a fat soluble form of thiamine that bypasses thiamine transporters.  Ask for an Erythrocyte Transketolace Activity Assay to check your thiamine levels asap.  Routine blood tests for thiamine are not an accurate measure of  thiamine in the body.   Absorption of essential vitamins like Thiamine is altered in Celiac Disease due to damaged villi, inflammation and dysbiosis.  The Gluten Free diet can be lacking in vitamins and minerals.  Discuss supplementing with all the eight B vitamins,  the four fat soluble vitamins and necessary minerals. Please keep us posted on your progress! References: Drug-nutrient interactions: discovering prescription drug inhibitors of the thiamine transporter ThTR-2 (SLC19A3) https://pubmed.ncbi.nlm.nih.gov/31764942/ The Pivotal Role of Thiamine Supplementation in Counteracting Cardiometabolic Dysfunctions Associated with Thiamine Deficiency https://pmc.ncbi.nlm.nih.gov/articles/PMC11988323/
    • knitty kitty
      Hi, @Sue7171, I thought you might be interested in this article about Lyme disease and the discussion after the article.   I found this article enlightening.  The finding that not only can alpha gal be problematic, but advantageous infection with Staph aureus can be problematic.   The Acari Hypothesis, VII: accounting for the comorbidity of allergy with other contemporary medical conditions, especially metabolic syndrome https://pmc.ncbi.nlm.nih.gov/articles/PMC11983536/  
×
×
  • Create New...