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Symptoms that don't disappear at all

Anonimo9719
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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?

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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/

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    • trents
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      Welcome to the celiac.com community @EssexMum! First, let me correct some misinformation you have been given. Except in the case of what is known as "refractory" celiac disease, which is very rare, it is not true that the "fingers" will not grow back once a consistently gluten free diet is adopted. Celiac disease is an autoimmune condition whereby the ingestion of gluten triggers an inflammatory process that damages the millions of tiny finger-like projections that make up the lining of the small bowel. We call this the "villous lining". Over time, continued ingestion of gluten on a regular basis results in the wearing down of these fingers which greatly reduces the surface area of this very important membrane. It is where essentially all the nutrition from what we eat is absorbed. So, losing this surface area results in inefficiency in nutrient absorption and often to medical problems related to nutrient deficiencies. Again, if a gluten-free diet is consistently observed, the villous lining of the small bowel should rebound. "We was informed that her body absorbs the gluten rather then rejecting it and that is why she doesn't react to the gluten straight away, it will be a build up and then the pains start. " That sounds like unscientific BS to me. But it does sound like your stepdaughter may have a type of celiac disease we know as "silent" celiac disease, meaning, she is asymptomatic or at least the symptoms are not intense enough to usually notice. She is not completely asymptomatic, however, because you stated was experiencing tummy aches off and on. Cristiana gives some good suggestions about ordering "safe" food for your stepdaughter from restaurant menus in Europe. You must realize that as the step parent who only has her part of the time you have no real control over how cooperative her other set of parents are with regard to your stepdaughter's needs to eat gluten free. It sounds like they don't really understand the seriousness of the matter. This is very common in family settings where other members are ignorant about celiac disease and the damage it can do to body systems. So, they don't take it seriously. The best you can do is make suggestions. Perhaps print out some info about celiac disease from the Internet to send them. Being inconsistent with the gluten free diet keeps the inflammation smoldering and delays or inhibits healing of the villous lining. 
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      Good evening @EssexMum You are quite right to be concerned about this situation.  Once diagnosed as coeliac, always a coeliac, and the way to heal  is through adopting and sticking to a strict gluten diet. That said... I have travelled twice to France since my diagnosis, firstly in May 2013 and again in August 2019.   My spoken French isn't bad, and whilst there I tried my best to explain my needs to chefs and catering staff, and I read labels very carefully when shopping in supermarkets, but both times I came away with worsening gastric symptoms and pain. Interestingly,  after the second holiday, my annual coeliac review took place the following month and although I'd been very careful to avoid gluten all year, thanks to that August holiday my coeliac antibodies were elevated,  Clearly I hadn't been imagining these symptoms and they must have been caused by gluten sneaking in somehow. When I spoke to my gastroenterologist on my return, who is an excellent doctor, he told me with a smile that this was a very common experience in France among his patients, and not to worry too much about it! In fact, before we went away in May 2013, which was just after I had been formally diagnosed, he told me not to even bother trying to adopt a gluten free diet until I returned, knowing what France was like, but I was feeling so awful at that time I ignored his advice and at least tried to make a start with it. (I ought to say - both these visits were some time ago, so perhaps things are a lot better there now.) So what to do?  I would say at least try to explain to catering staff the situation - they should be able to rustle up a plate of cheese, boiled eggs, tuna, salad and fruit, and if things like crackers and gluten-free pot noodle or oats can be packed in the UK, those can be produced at mealtimes.    Of course, most larger supermarkets in France do now cater for coeliacs, but when I was last there the the choice wasn't as wide a range as we have in the UK but I think that is partly because the French like to cook from scratch, whereas our gluten-free aisles have quite a lot of dried or pre-baked goods in them/convenience foods, because I think we as a nation tend to use them more. I would be worth doing a bit of research on the internet before the trip, - the words you want are 'sans gluten'.  I've just googled 'sans gluten Disney Paris" and this came up.  I do hope at least some of this is of help. https://www.tripadvisor.co.uk/Restaurants-g2079053-zfz10992-Disneyland_Paris_Ile_de_France.html  Whatever befalls in France, at least your stepdaughter can resume her usual diet on her return. On a related tack, would you be happy to post any positive findings/tips upon her return - it might be of use to others travelling to Disneyland Paris with children in future? Cristiana
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