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

Ok, I Feel Like I Must Be Crazy!


Ridgewalker

Recommended Posts

Ridgewalker Contributor

Ok, this is actually about me for the first time, not my kids. So if this post needs to be moved, go for it.

About 3 weeks ago, I went gluten-free. This is why:

- Diarrhea virtually every day for at least 4 or 5 months (before that, I bounced between diarrhea and constipation for years)

- Bloated stomach for at least 4 or 5 months

- Frequent edema in hands, face, and legs/feet

- Pain in neck and joints, development of bursitis in right knee

- Increasing infections- pneumonia, ear infections, chronic sinus infection

- Increasing dental problems, despite all efforts

- Fatigue... fatigue... fatigue

- My mom has full blown Celiac; my son is gluten-intolerant at the least

After a mere 3 days on a gluten-free diet, I had the first normal BM in months. I don't ever remember feeling so wide awake in my life! I have more energy, too, which is a different thing altogether. I seem to see things clearer, and just, I don't know how else to say it... I feel awake! Also, my belly shrunk about 3 inches overnight. I can also now wear my wedding ring again, which I hadn't been able to do for months.

I plan on doing a gluten challenge, maybe in a couple more weeks? Don't know.

But now-- :wacko: For the past 24 hours, my body has gone a bit haywire! Yesterday I was having diarrhea on and off all day, my belly blew back up, hands and feet swelled back up, and furthermore... I've been grouchy and having hot flashes. It got down to about 50 degrees here last night (bizarre since it was up over 100 a couple weeks ago) and my husband went to turn the heat on... I practically shrieked at him like he was trying to kill me. Usually it is the exact opposite- I turn the heat up, he turns it back down.

My stomach has been hurting and gassy. I'm exhausted from not sleeping much last night.

And the wierdest, most random thing... This morning, my taste buds apparently are still asleep. I can barely taste anything. That has never happened to me before, and I have no idea what this is all about.

Ok, so that's what's going on. Feeling somewhat better this morning, compared to yesterday. Any insight or comments are welcome.

-Sarah


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



Celiac.com Sponsor (A8-M):



hathor Contributor

You might have been accidentally glutened. There could be hidden gluten in something you ate or drank (did you check everything? I found out that two teas I liked had gluten -- all the labels said was "natural flavors"), a medicine, a personal care product. There could still be gluten on something in your kitchen or a product you bought was cross-contaminated.

However, I find the timing interesting. I had a major diarrheal blowout after 3 weeks gluten free (and I react to gluten the reverse way). It was as if my body was trying to purge itself of the bits of poison that had been adhering to my insides. After that, things died down and I was much better. (Complete intestinal normality took some months, though.) A number of times since then, I've seen other people on this list report the same experience. It seems to come after roughly 3 weeks.

Even absent the "3 week curse" B) many seem to report that their first couple months on the diet can be rocky. I think it takes a body time to learn how to function properly. Since you seemed to have such a positive response to the diet, I think you are on the right track. I don't know that you want to challenge yourself with gluten. What I did was to do Enterolab testing, which confirmed for me that I was on the right track.

I hope you get feeling better soon.

glutenfreegirls Newbie

I had recurrent symptoms on and off for the first few months after going gluten free. I always racked my brain trying to figure out what had gluten in it, but I think it was just my body healing. It was not a straight line of improvement, but a bumpy road with an overall upward trend.

I would say hang in there and wait.

I, too, wouldn't be anxious to do a challenge. You will probably get glutened accidently at some point, and then you'll know.

Good luck,

Nancy

bfarnsworth0709 Rookie

If something says "natural flavors" are we not supposed to eat it?

What are the other "hidden" terms to look for?

Thanks,

Bobbi (this might explain a lot!!!!)

ShayBraMom Apprentice

Sounds to me toop very much like Glutening! If it was that bad for you I wonder how bad it must be for the kids to be glutened! I hope you feel better soon!!!!

Ok, this is actually about me for the first time, not my kids. So if this post needs to be moved, go for it.

About 3 weeks ago, I went gluten-free. This is why:

- Diarrhea virtually every day for at least 4 or 5 months (before that, I bounced between diarrhea and constipation for years)

- Bloated stomach for at least 4 or 5 months

- Frequent edema in hands, face, and legs/feet

- Pain in neck and joints, development of bursitis in right knee

- Increasing infections- pneumonia, ear infections, chronic sinus infection

- Increasing dental problems, despite all efforts

- Fatigue... fatigue... fatigue

- My mom has full blown Celiac; my son is gluten-intolerant at the least

After a mere 3 days on a gluten-free diet, I had the first normal BM in months. I don't ever remember feeling so wide awake in my life! I have more energy, too, which is a different thing altogether. I seem to see things clearer, and just, I don't know how else to say it... I feel awake! Also, my belly shrunk about 3 inches overnight. I can also now wear my wedding ring again, which I hadn't been able to do for months.

I plan on doing a gluten challenge, maybe in a couple more weeks? Don't know.

But now-- :wacko: For the past 24 hours, my body has gone a bit haywire! Yesterday I was having diarrhea on and off all day, my belly blew back up, hands and feet swelled back up, and furthermore... I've been grouchy and having hot flashes. It got down to about 50 degrees here last night (bizarre since it was up over 100 a couple weeks ago) and my husband went to turn the heat on... I practically shrieked at him like he was trying to kill me. Usually it is the exact opposite- I turn the heat up, he turns it back down.

My stomach has been hurting and gassy. I'm exhausted from not sleeping much last night.

And the wierdest, most random thing... This morning, my taste buds apparently are still asleep. I can barely taste anything. That has never happened to me before, and I have no idea what this is all about.

Ok, so that's what's going on. Feeling somewhat better this morning, compared to yesterday. Any insight or comments are welcome.

-Sarah

hathor Contributor
If something says "natural flavors" are we not supposed to eat it?

What are the other "hidden" terms to look for?

Thanks,

Bobbi (this might explain a lot!!!!)

"Natural flavors" may be OK, but might not be. Unfortunately, we need to check. I had thought that the sort of flavoring tea would take wouldn't entail gluten; well, I was wrong.

Here is a list of forbidden ingredients. At the bottom of the page is a list of ingredients where you have to check.

https://www.celiac.com/st_prod.html?p_prodi...-24107351359.82

If only the labeling requirements included gluten ... that would save us a lot of trouble and unnecessary pain.

I do have to memorize this list or keep it with me when I shop ...

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)

    • There are no registered users currently online
  • 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.