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

Need Help, Suggestions, Advice Please!

mindypal

Recommended Posts

mindypal Rookie
mindypal
Posted

Hello all,

I have been feeling ill for about a year now, probably that's nothing compared to a lot of you on here, but it's sure not been too fun. Back last Oct. I started having diarrhea, cramping, weight loss, insomnia, depression, fatigue, etc. and later found out it was a parasite. I've been treated, but since have still not regained my health. I've had several people mention Celiac's the past few months to me, as my symptoms seem to match up. And I just got the blood test back yesterday saying I was negative, however something tells me to not completely give up on this, and I ordered the test from Enterolab yesterday.

Soooo, was wondering if I kind of listed what's been going on if some of you could let me know what you think, could it be a gluten sensitivity from what you all know, or do you think it is something different.

I've had problems w/digestion, not neccessaily liquid stool, but loose and in small pieces, usually pale in color and foul smelling. Often it will have chunks of undigested food. Also gas, weight loss, loss of appetite, insomnia, depression, fatigue, brain/memory fog, hair loss. The weirdest thing that I really cannot figure out is the skin issues. I've always been blessed with a very clear complexion all my life, but since all this stuff started up that's been a different story. And in particular the past few months have been yucky. I have these bumps along my hairline and under my jawline, kinda look like pimples, but not exactly and they don't seem to go away. Also get these flesh colored bumps, usually in patches popping up a lot around my mouth, and on my shoulders. Have gotten some bumps on my butt too, but they are usually red. Skin also feels very dry.

Anyways, my plan was to continue eating gluten until the Enterolab test comes in and then once I send my lovely ol poo off to start the gluten diet as if the test will come back positive. That way I won't be wasting time waiting for results & what not. I must also add that I've been on medical leave for several weeks now trying to figure everything out. I am a teacher and attempted going back to work, but the fatigue and brain fog were so bad I felt incredibly useless and knew I had to figure out that the deal was until I could go back. That's why I fee like there is a time issue.

What do you all think? Does it sound like it could be a gluten sensitivity? What do you think I should do? Does/did anyone else have the weird skin stuff happen w/them? Any information would be very greatly appreciated!!!

Thanks!!!

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

Celiac.com Sponsor (A8-M):


CarlaB Enthusiast
CarlaB
Posted

Welcome!

It definately sounds like a possibility. Unlike conventional testing, you do not have to be consuming gluten for Enterolab's tests to be accurate, so you can stop today!! :) See my Enterolab results below, I was gluten-free for almost three months -- both my blood test and endoscopy had been negative.

Guhlia Rising Star
Guhlia
Posted

Ditto what Carla said on starting the gluten free diet immediately. If you have Celiac/gluten intolerance it will still show up on the Enterolab test, even if you're eating gluten free. Good luck! I hope you get some answers!

Ursa Major Collaborator
Ursa Major
Posted

It sure sounds like celiac disease is a possibility. And as Carla and Angie said, no need to wait for the Enterolab kit to arrive, you can try going gluten-free right now. If you feel better on the diet, you would pretty much have your answer. It would be so nice if you would start feeling better soon!

And even if celiac disease isn't your problem, a gluten-free diet benefits many other issues, too and is a healthy diet.

mindypal Rookie
mindypal
Posted
  • Author

Do you think it would show up even if I didn't order the gene test? I only got the basic $99 one.

Also as far as removing gluten, I know all the common sense stuff about looking for it in carbs & such, but what about condiments and canned goods? Is it in that stuff too? I think I really would like to start the gluten diet? It's just weird how many people have brought it up too me, it's almost like the universe is trying to tell me something I just haven't been listening.

How soon did you guys start to notice a difference once you began the gluten free diet?

Thanks!!!! :)

TriticusToxicum Explorer
TriticusToxicum
Posted
Also as far as removing gluten, I know all the common sense stuff about looking for it in carbs & such, but what about condiments and canned goods? Is it in that stuff too? I think I really would like to start the gluten diet? It's just weird how many people have brought it up too me, it's almost like the universe is trying to tell me something I just haven't been listening.

How soon did you guys start to notice a difference once you began the gluten free diet?

Thanks!!!! :)

Yes, you've really got to watch the condiments. There is a "safe" list and list of forbidden ingredients on this site somewhere.

As far as how long before noticing a difference, I noticed great improvement with respect to the gas/bloating/discomfort within a few weeks. The big D tends to linger a bit longer, the brain fog and malaise seemed to hold on for the longest time. I was feeling pretty good at about 8 months out. Everyone responds differently, so your results may vary. (sounds like an infomercial!)

Aerin328 Apprentice
Aerin328
Posted
Do you think it would show up even if I didn't order the gene test? I only got the basic $99 one.

Also as far as removing gluten, I know all the common sense stuff about looking for it in carbs & such, but what about condiments and canned goods? Is it in that stuff too? I think I really would like to start the gluten diet? It's just weird how many people have brought it up too me, it's almost like the universe is trying to tell me something I just haven't been listening.

How soon did you guys start to notice a difference once you began the gluten free diet?

Thanks!!!! :)

It should show up in the basic test, though the complete test includes not only the gene test but casein intolerance as well (which many celiacs seem to show up positive for).

Most condiments and canned goods have gluten, yes, but it's case by case.

How long does it take to notice a difference? That's a darn good question, and the answer is complicated and varied by person. Most celiacs feel noticably better in days, though it can take 1-2 years for the antigliadin antibodies to leave the bloodstream (and therefore for the immune system's crazy reaction to stop).

Also there is a ton of good information on this site, so peruse about!

Good luck!

Christian

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

Celiac.com Sponsor (A8-M):


Archived

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

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,855
    • Most Online (within 30 mins)
      7,748
    Tara M
    Newest Member
    Tara M
    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

    • cristiana
      Ibuprofen

      By cristiana · Posted

      @Colleen H   I am just curious,  when you were tested for coeliac disease, did the doctors find out if you had any deficiencies? Sometimes muscle pain can be caused by certain deficiencies, for example, magnesium, vitamin D, calcium, and potassium.   Might be worth looking into having some more tests.  Pins and needles can be neuropathy, again caused by deficiencies, such as iron and B12,  which can be reversed if these deficiencies are addressed. In the UK where I live we are usually only tested for iron, B12 and vitamin D deficiencies at diagnosis.   I was very iron anemic and supplementation made a big difference.  B12 was low normal, but in other countries the UK's low normal would be considered a deficiency.  My vitamin D was low normal, and I've been supplementing ever since (when I remember to take it!) My pins and needles definitely started to improve when my known deficiencies were addressed.  My nutritionist also gave me a broad spectrum supplement which really helped, because I suspect I wasn't just deficient in what I mention above but in many other vitamins and minerals.  But a word of warning, don't take iron unless blood tests reveal you actually need it, and if you are taking it your levels must be regularly monitored because too much can make you ill.  (And if you are currently taking iron, that might actually be making your stomach sore - it did mine, so my GP changed my iron supplementation to a gentler form, ferrous gluconate). Lastly, have you been trying to take anything to lessen the pain in your gut?  I get a sore stomach periodically, usually when I've had too much rich food, or when I have had to take an aspirin or certain antibiotics, or after glutening.  When this happens, I take for just a few days a small daily dose of OTC omeprazole.  I also follow a reflux or gastritis diet. There are lots online but the common denominators to these diets is you need to cut out caffeine, alcohol, rich, spicy, acidic food etc and eat small regularly spaced meals.   When I get a sore stomach, I also find it helpful to drink lots of water.  I also find hot water with a few slices of ginger very soothing to sip, or camomile tea.  A wedge pillow at night is good for reflux. Also,  best not to eat a meal 2-3 hours before going to bed. If the stomach pain is getting worse, though, it would be wise to see the doctor again. I hope some of this helps. Cristiana    
    • Me,Sue
      Knowing what to do when feeling unwell.

      By Me,Sue · Posted

      I was diagnosed with coeliac disease a couple of years ago [ish]. I love my food and a variety of food, so it's been hard, as it is with everyone. I try and ensure everything I eat doesn't contain gluten, but occasionally I think something must have got through that has gluten in. Mainly I know because I have to dash to the loo, but recently I have noticed that I feel nauseous after possibly being glutened. I think the thing that I have got better at is knowing what to do when I feel wiped out after a gluten 'episode'. I drink loads of water, and have just started drinking peppermint tea. I also have rehydration powders to drink. I don't feel like eating much, but eventually feel like I need to eat. Gluten free flapjacks, or gluten free cereal, or a small gluten free kids meal are my go to. I am retired, so luckily I can rest, sometimes even going to bed when nothing else works. So I feel that I am getting better at knowing how to try and get back on track. I am also trying to stick to a simpler menu and eat mostly at home so that I can be more confident about what I am eating. THANKS TO THOSE WHO REPLIED ABOUT THE NAUSEA .
    • Francis M
      The Happy Tart review

      By Francis M · Posted

      Thanks. Since the back and forth and promises of review and general stalling went on for more than six months, the credit company will no longer investigate. They have a cutoff of maybe six months.
    • Scott Adams
      The Happy Tart review

      By Scott Adams · Posted

      Is this the same restaurant? https://www.facebook.com/TheHappyTartFallsChurch/ Is it too late to take this up with your credit card company? Normally you have a few months to do a chargeback with them. It seems very odd that they are taking this approach with someone who is likely to be a regular customer--not a good business-minded way of handling things!
    • Scott Adams
      Stomach burning and neuropathy

      By Scott Adams · Posted

      Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: The most common nutrient deficiencies associated with celiac disease that may lead to testing for the condition include iron, vitamin D, folate (vitamin B9), vitamin B12, calcium, zinc, and magnesium.  Unfortunately many doctors, including my own doctor at the time, don't do extensive follow up testing for a broad range of nutrient deficiencies, nor recommend that those just diagnosed with celiac disease take a broad spectrum vitamin/mineral supplement, which would greatly benefit most, if not all, newly diagnosed celiacs. Because of this it took me decades to overcome a few long-standing issues I had that were associated with gluten ataxia, for example numbness and tingling in my feet, and muscle knots--especially in my shoulders an neck. Only long term extensive supplementation has helped me to resolve these issues.        
×
×
  • 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.