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

Want To Share My Story, And See What People Think Possibly Celiac


bman34

Recommended Posts

bman34 Newbie

Like most posts I've read here it seems many people are in the same boat I'm on. My whole life I've had difficulty with a 'sensitive' stomach, and difficult bowel movements. It's funny because I've always thought that the difficult BM's is just the way it is, and everyone is like that. Since BM's are such a taboo subject it took me living with my room mate to really notice that I was not normal. So like most people I started to look for answers to my issues. I'm 34 now, and up until now my issues haven't really been what I would call severe. So it was easy to shake the issues off, or after a difficult BM I would just feel ok. During my mid 20's I developed pretty deep anxiety, and general negativity. I also at that time gained some weight so I had though that it was due mostly to my weight gain (around 50lbs)

Routinely I would meet people that were severely overweight, and seemed to be fine digestive-wise. I wouldn't call these people *healthy* by any stretch of the word, but I always wondered why they had more energy than I did and why even during physical activity seemed to not get dehydrated/tired etc as quickly.

Anyway so to get to the point, last week I started having severe stomach aches/cramps, with bouts of diarrhea. I have long since backed off of my milk/lactose consumption so I was pretty surprised that I was feeling so horrible. I went to the Doctor, and listed off my symptoms:

  • Difficult BMs/Diarrhea/Severe stomach cramps
  • Sluggish/Tired all of the time (not feeling sharp/foggy)
  • Depressed/Anxious/Not interested in old hobbies etc..
  • Dehydrate easily

He recommended I remove Gluten, and was going to give the blood test for Celiac, but felt it wasn't very telling in his opinion so he didn't do the test. He instead did a bunch of other blood tests, and took a stool sample to look for paracites/amoebas white blood cells etc. All of that stuff so far has come up negative.

So Friday night I gave up gluten, and have been free if it all weekend. I feel MUCH better already. I feel sharper, felt like I got better sleep, no bad BMs, no stomach aches (like last week), less anxiety, feel sharper. I almost feel like I can SEE better!

So my concern is that I have a placebo effect, and haven't found the real issue. It's almost too good to be true so far. I am excited to possibly have found the issue that has been plaguing me for most of my adult life so far.

Can anyone offer their opinion from personal experience? Does it seem that this is celiac? What advice can anyone offer?

Thanks in advance!


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



Celiac.com Sponsor (A8-M):



shopgirl Contributor

I think you need to relax and enjoy it. :) I'm a worrier, too, but if you feel better when you don't eat gluten, be glad about it. It could be Celiac or it could be a gluten intolerance. If you really want to know, you can go back on gluten and find a doctor to test you. But you need to be eating gluten daily for your test results to be normal.

Dixiebell Contributor

I had extreme fatigue, depression, anxiety, lack of intrest in anything, my stomach would wake me in the night(no details), very low vit D, all over joint pain, migranes for years, sinus problems, I think that is all for now. All of this has resolved itself almost completely since starting gluten free in May. My celiac test were neg. I agree, if it makes you feel better, do it.

bman34 Newbie

I think you need to relax and enjoy it. :) I'm a worrier, too, but if you feel better when you don't eat gluten, be glad about it. It could be Celiac or it could be a gluten intolerance. If you really want to know, you can go back on gluten and find a doctor to test you. But you need to be eating gluten daily for your test results to be normal.

Well... I am a worrier, and I think it's a bit warranted after years of not knowing and having these issues. :-)

Any idea when I should feel 100% normal day to day? How long did it take you on a no-gluten diet to get there?

shopgirl Contributor

Well... I am a worrier, and I think it's a bit warranted after years of not knowing and having these issues. :-)

Any idea when I should feel 100% normal day to day? How long did it take you on a no-gluten diet to get there?

It took me a long time to get a diagnosis too. :)

I've been gluten-free a little over a month and still feel symptoms. My GI doctor said it could take months before all my symptoms disappear completely. But knowing the source of all my problems has at least begun to put my mind at ease.

The anxiety, however, was one of my first symptoms to disappear gluten-free. I stopped having regular anxiety and panic attacks after about two weeks. Hope that helps.

T.H. Community Regular

From what I've read here on the forums, it depends greatly on the symptoms.

Symptoms that are from the gluten and an immediate reaction seem to heal up quick. Symptoms that result from long term damage can take longer.

When I finally got completely gluten free (it took me a while to figure out that my gluten tolerance was a bit lower than the norm), I noticed a difference in about 1-3 days. If I get glutened, it takes me about a day or two for the worst symptoms to go away, and a week or two for some of the others to clear up. So having a nearly immediate improvement like you are noticing? Not unusual.

bman34 Newbie

So I had a setback today. I had a slightly loose stool, and I got pretty discouraged. I still however am feeling much better, and can still think better. As shopgirl said I feel 0 anxiety compared to last week for example. It's quite liberating actually.

When did everyone get their BM's to firm up? I'm looking forward to a time when I haven't had loose BMs for weeks, and perhaps months.

At least this morning I didn't have a stomach ache or cramps in my abdominal area so that's good.


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



Celiac.com Sponsor (A8-M):



bman34 Newbie

I think it may be the salads I'm having with dinner that are loosening me up. Anyone else get loose from salads? I still feel way better than I did with wheat. What a huge difference. It's almost like I'm a new person. It's funny that something that is such a staple in the diets of the world such as wheat can mess so many people up so badly. There really needs to be more information about this issue out there.

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 lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    2. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    3. - knitty kitty replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    4. - lizzie42 replied to lizzie42's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      6

      Son's legs shaking

    5. - Scott Adams replied to Russ H's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Anti-endomysial Antibody (EMA) Testing

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

    • Total Members
      132,870
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Who's Online (See full list)

  • Upcoming Events

  • Posts

    • knitty kitty
      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
    • Scott Adams
      That is interesting, and it's the first time I heard about the umbilical cord beings used for that test. Thanks for sharing!
×
×
  • 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.