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

Symptoms that don't disappear at all

Anonimo9719
 Share

Recommended Posts

Anonimo9719 Newbie
Anonimo9719
Posted

Hi, everyone. I am 25 years old and I have been experiencing a lot of symptoms since a long time and I am absolutely unable to get rid from any of them. My main digestive issue is pale and very soft stools, like a mild diarrhea that is happening almost everyday. I have a lot of gases as well. The diarrhea gets worse when I eat a lot of nuts but, if I don't eat them, it doesn't improve too much. I have been always skinny and it is getting worse last months. Moreover, it seems that when I eat a lot, then I get worse than when I eat less. Moreover, I usually feel very tired, irritable, angry, sleepy and I forget things constantly. Specially when I eat a lot and then I get this diarrhea, I feel very week, my hands start to tremble and, overall, I feel really sick. However, these days I was eating less and surprisingly, I don't feel that way, but a bit a better (but I don't feel even close to my 80%, anyway).

I had recently a blood test and everything looked fine. Just bilirrubine was too high, but I have Gilbert's Syndrome, so I know that's completely normal. My GP told me to go lactose free, but it didn't work at all. The only thing that made me improve was avoid eating huge amount of nuts. 

On the other hand, I need to say that I have also struggled with hair loss during a lot of time. I lose a huge amount of hair everyday and it didn't stop at all since I first realized this. However, as my GP mentioned, it's just androgenetic allopecia, so I don't have anything to do with that, just waiting to see myself going bald. Appart from that, the skin of my face is often itchy, full of pimples and very dry (and even other parts of my body). I think I should have showers less often, because it seems that I am completely damaging my skin. I also struggle with erectile dysfunction, premature eyaculation that seem to be caused by loss of libido. I am completely impotent, no erections, never! Almost no sexual desire as well.

Going back to my blood tests, I also got checked of celiac disease with IgA transglutaminase and it was negative by far (almost 5 times below the top limit). As the lactose free diet didn't work, my GP referred my to the gastroenterologist but... yeah, pretty cool... I booked a consultation on May next year, because it couldn't have been earlier! So, as you can imagine, I'm completely desperated with this right now. It looks like I'm crazy because it seems that everything I eat makes me feel bad so I am trying to avoid this and that, without results. The only thing I am achieving is loosing even more hair and lose even more weight so yeah... I am fine 😑.

My GP also told me that pale stools could be a normal thing with Gilbert's Syndrome but that doesn't explain diarrhea, I guess (despite that can be a symptom, but I think Gilbert's Syndrome shouldn't give chronic diarrhea this way). I don't want to feel like this the rest of my life, specially with no sexual desire. So, I was thinking going gluten-free for a little time and see if that makes me improve, but maybe everyone will think I'm crazy and say "I am sure that you're not celiac". I've seen that some people improve with gluten-free diet even if they aren't diagnosed as celiac (non-celiac gluten sensitivity, for example). Probably that won't be my case, but I should give a try, maybe. I have also read that some people get a negative in their celiac tests, but they are actually celiac because the test returns a certain amount of false negatives.

For some years, my symptoms haven't changed at all, so I'm desperate about this. I tried avoiding alcohol (0% since 2020), walking more, changing some things of my lifestyle and even having showers less often to avoid washing my hair too much and damaging it even more. Nothing worked at all. Some of the things that should "make me feel better" made me feeling much, much worse. Any idea of what I should do?

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

Celiac.com Sponsor (A8-M):


trents Grand Master
trents
Posted

Welcome to the forum, Anonimo9719!

Several things I would point out to you:

1. The tTG-IGA antibody test for celiac disease misses 20% of those who actually do have celiac disease if they are of white European decent and 80% of those who actually have celiac disease if they are of black African decent. So, you can see that it is far from a perfect test. It would have been far better had your physician order a "full celiac panel" consisting of several antibody tests instead of just ordering the one test. Here is a primer outlining the test that can and should be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Is there any chance of getting your physician to order a full panel?

2. It is certainly possible that you have NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. NCGS and celiac disease share many of the same symptoms but there is no test for diagnosing NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. With either one, the only way to treat the disease at this point in time is to totally abstain from gluten for a lifetime. NCGS does not damage the villi that line the small bowel as does celiac disease but can harm other body systems.

3. If you believe you will pursue more testing, either more comprehensive blood antibody testing or an endoscopy with biopsy (which is t he gold standard for diagnosing celiac disease) you must continue to eat regular amounts of gluten. Starting a gluten free diet before testing is complete will invalidate the testing.

Anonimo9719 Newbie
Anonimo9719
Posted
  • Author
40 minutes ago, trents said:

Welcome to the forum, Anonimo9719!

Several things I would point out to you:

1. The tTG-IGA antibody test for celiac disease misses 20% of those who actually do have celiac disease if they are of white European decent and 80% of those who actually have celiac disease if they are of black African decent. So, you can see that it is far from a perfect test. It would have been far better had your physician order a "full celiac panel" consisting of several antibody tests instead of just ordering the one test. Here is a primer outlining the test that can and should be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

Is there any chance of getting your physician to order a full panel?

2. It is certainly possible that you have NCGS (Non Celiac Gluten Sensitivity) instead of celiac disease. NCGS and celiac disease share many of the same symptoms but there is no test for diagnosing NCGS. Celiac disease must first be ruled out. NCGS is 10x more common than celiac disease. With either one, the only way to treat the disease at this point in time is to totally abstain from gluten for a lifetime. NCGS does not damage the villi that line the small bowel as does celiac disease but can harm other body systems.

3. If you believe you will pursue more testing, either more comprehensive blood antibody testing or an endoscopy with biopsy (which is t he gold standard for diagnosing celiac disease) you must continue to eat regular amounts of gluten. Starting a gluten free diet before testing is complete will invalidate the testing.

Hi, thank you for the quick response,

I think that I couldn't ask for a full celiac panel, because I probably need to wait for the gastroenterologist. In the end, it seems that GP's don't want to ask for tests when they don't have too much idea on how to proceed, like in this case. They prefer to ask experts to do that. I know the tTG-IGA thing, so I didn't discard that option.

I know that I should eat gluten anyway if I want to get properly tested in a biopsy, for example, but it is a bit of a shame that I have to wait 6 months to have an appointment with the gastroenterologist. Finally, it seems that I need to try these things myself. I know it's risky because I've already lost a lot of additional weight for this kind of "experiments" so, I need to be careful in this one, because it can be much more damaging than good. Probably, I can give it a try, reducing little by little the amount of gluten and see what happens.

T burd Enthusiast
T burd
Posted
41 minutes ago, Anonimo9719 said:

Hi, thank you for the quick response,

I think that I couldn't ask for a full celiac panel, because I probably need to wait for the gastroenterologist. In the end, it seems that GP's don't want to ask for tests when they don't have too much idea on how to proceed, like in this case. They prefer to ask experts to do that. I know the tTG-IGA thing, so I didn't discard that option.

I know that I should eat gluten anyway if I want to get properly tested in a biopsy, for example, but it is a bit of a shame that I have to wait 6 months to have an appointment with the gastroenterologist. Finally, it seems that I need to try these things myself. I know it's risky because I've already lost a lot of additional weight for this kind of "experiments" so, I need to be careful in this one, because it can be much more damaging than good. Probably, I can give it a try, reducing little by little the amount of gluten and see what happens.

If I were you I would insist that you be seen sooner by a gastroenterologist. Maybe you can call around and find one that has an opening. you sound like a classic celiac to me. Does take months of being off gluten to feel better, though you likely will notice right away, and a few months of eating it before your biopsy. 

trents Grand Master
trents
Posted

As long as you reintroduce regular amounts of gluten (the equivalent of two pieces of wheat bread daily) for two months before your appointment with the gastroenterologist you should be able to trial a gluten free diet now. These are the Mayo Clinic guidelines for a pretest gluten challenge.

knitty kitty Grand Master
knitty kitty
Posted

@Anonimo9719,

I found some interesting articles...

Having diarrhea for a long period of time can affect how much nutrients you absorb from your food.  Nutritional deficiencies can affect hair loss.

“Let Food be Thy Medicine”: Value of Nutritional Treatment for Hair Loss

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8647708/

And...

A new potential risk factor in patients with erectile dysfunction and premature ejaculation: folate deficiency

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4236337/

And...

Your diarrhea may be caused by Gastrointestinal Beriberi....

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8533683/

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
 Share
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.