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

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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      126,829
    • Most Online (within 30 mins)
      7,748

    Jysy
    Newest Member
    Jysy
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69.7k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Kiwifruit
      This is all really useful information, thank you so much to you both.    I have a history of B12 and vit D deficiency which has always just been treated and then ignored until it’s now again.
    • trents
      Welcome to the forum, @Gill.brittany8! There are two main genes that have been identified as creating potential for developing celiac disease, HLDQ2 and HLDQ8. Your daughter has one of them. So, she possesses genetic the potential to develop celiac disease. About 40% of the general population carries one or both of these genes but only about 1% of the general population develops celiac disease. It takes both the genetic potential and some kind of triggering stress factor (e.g., a viral infection or another prolonged health problem or an environmental factor) to "turn on" the gene or genes. Unfortunately, your daughter's doctor ordered a very minimal celiac antibody panel, the tTG-IGA and total IGA. Total IGA is not even a test per celiac disease per se but is a check for IGA deficiency. If the person being checked for celiac disease is IGA deficient, then the scores for individual IGA tests (such as the tTG-IGA) will be abnormally low and false negatives can often be the result. However, your daughter's total IGA score shows she is not IGA deficient. You should consider asking our physician for a more complete celiac panel including DGP-IGA, TTG_IGG and DGP-IGG. If she had been avoiding gluten that can also create false negative test results as valid antibody testing requires having been consuming generous amounts of gluten for weeks leading up to the blood draw. Do you know if the GI doc who did the upper GI took biopsies of the duodenum and the duodenum bulb to check for the damage to the small bowel lining caused by celiac disease? Having said all that, her standard blood work shows evidence of possible celiac disease because of an elevated liver enzyme (Alkaline Phosphatase) and low values for hemoglobin.
    • Gill.brittany8
      Hi everyone  After years of stomach issues being ignored by doctors, my 9 y/o daughter finally had an upper endoscopy which showed a ton of stomach inflammation. The GI doctor ordered some bloodwork and I’m attaching the results here. Part will be from the CBC and the other is celiac specific. I’m not sure what’s relevant so I’m just including extra information just in case.   The results are confusing because they say “No serological evidence of celiac disease. tTG IgA may normalize in individuals with celiac disease who maintain a gluten-free diet. Consider HLA DQ2 and DQ8 testing to rule out celiac disease.” But just a few lines down, it says DQ2 positive. Can someone help make sense of this? Thanks so much.  result images here: https://ibb.co/WFkF0fm https://ibb.co/kHvX7pC https://ibb.co/crhYp2h https://ibb.co/fGYFygQ  
    • Mnofsinger
      Those are great points and some follow up thoughts and ideas. I think you're both stating the same thing in two different ways, but I appreciate the "accuracy" of what you're getting to.   1. Are you both stating that the "too salty of a taste" could be triggered by a histamine reaction, and the flavor is coming from the electrolytes? If that is the case, wouldn't the individuals mouth always be salty during a "Glutening" situation, or are we saying that the person could get "use to the flavor" until introducing food or beverage and that could be enough to "stir the pot" and notice the salty flavor? 2. To push back on "#1": If that were true anyone with issues of histamine releasing foods/treatments would experience the same thing. Also, I did not experience a situation where most beverages were "too salty". Thoughts?
    • trents
      The only vegetable sources of B12 are some fermented bean products using a certain microbiotic culture. It is next to impossible to get adequate B12 from vegetable sources without supplementation. Same with D3. Some mushrooms can make D3 when exposed to UV light. Are you vegetarian or vegan? Do you do dairy and eggs or no animal products at all? Low B12 and D3 could definitely cause or contribute to many of the symptoms you have been experiencing but would not cause celiac disease. It is more likely the other way around, especially if you are a vegetarian eating no animal products. Many of your symptoms seem neurological in nature. It is well known that the B vitamin complex is vital to neurological health but so is D3. https://pmc.ncbi.nlm.nih.gov/articles/PMC9820561/
×
×
  • Create New...