Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Could Use Some Prompt Advice/thoughts


mhb

Recommended Posts

mhb Apprentice

Been off gluten and dairy since June (plus soy, beans, eggplant and potatoes). Bloating and constipation vastly improved, periods now regular and acne all but gone. Using Florajen 3 about three weeks now. Digestion even better. Ditto tryptophan for sleep. Sometime in last 4 weeks or so I started "silent" GERD (no pain or heartburn - just like a bubble of acid or food in upper esophagus, sometimes worse than others - just at the annoyance level). I've never had this. I have a high deductible plan and have used the deductible this year, so I have a window to do an upper GI for this, but isn't it premature, or can visible GERD-related damage have occurred already? I never had the celiac test, but I've been gluten-free for 5 mo. now. On the other hand I could have it done simultaneously for the heck of it. I leave town 12/17 for the month, so really have a tight window to request an upper endo and get in their schedule if they can fit me. Still, hate to do it if not likely to show anything. Can anyone help me think this through?


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



Celiac.com Sponsor (A8-M):



ravenwoodglass Mentor

If you have been gluten-free since June then the endo will be useless for diagnostic purposes as far as celiac goes. You really should have had it before you went gluten free. Were you diagnosed by a positive celiac panel? If you were a rerunning of the panel may tell you how you are doing on the diet and healing. There is no reason not to have an endo to look for other issues but for celiac diagnosis it is too late without at least a 3 month gluten challenge.

dizzygrinch Enthusiast

hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

mhb Apprentice
hello, that i would say something as well. I am not diagnosed yet, but do feel a lot better, being gluten free for a couple of months now. Do I understand correctly, you still have GERD? my GERD has improved, but I still have symptoms. I have noticed, that for me, ANY citrus, oranges, tangerines, anything, will increase my heartburn. I cant do any soda, nothing bubbly. NO juice, no seasonings, especially pepper. Tons of things will bring on the heartburn and GERD symptoms, I even had a endoscopy last year, that showed evidence of "healed peptic ulcer disease" whatever that means, so I just have to watch everything I put in my mouth. I would to the endoscopy too, however, just to rule out any other problems...

I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

ravenwoodglass Mentor
I never had the GERd until recently, long after removing gluten. It's mild. I noticed it right after swallowing a gelcap pill this morning, and it seemed to come back after reading your post and thinking about it! ;-)

What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

mhb Apprentice
What was in that gelcap? It may be something your body doesn't like or if you didn't drink enough water, a full 8 oz glass is ideal to help the pill get all the way to the stomach, it may have been irritating. If you didn't drink enough when you took it it may have dissolved before it was supposed to.

This may be it. This morning when I noticed an immediate reaction I downed about 10 oz of water. I'll keep working this hypothesis and see what happens. meanwhile, see the 11/15/08 article on this site titled "'Atypical' GI Symptoms on the Rise Among Gluten-Free Celiac Patients":

"The team noted that the gastrointestinal symptoms experienced by group I differed from those present at the time of their celiac disease diagnosis. 6 patients from group I experienced anemia/diarrhea/weight loss, while ***12 experienced symptoms similar to gastroesophageal reflux disease***, and 24 patients experienced abdominal pain and/or constipation."

https://www.celiac.com/articles/21688/1/Aty...ents/Page1.html

mhb Apprentice
What was in that gelcap?

Oh ya, 15 billion probiotics (Floragen 3). They don't say drink with water but I will now and see if that helps.


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.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,928
    • Most Online (within 30 mins)
      7,748

    quilterjoyce
    Newest Member
    quilterjoyce
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.9k
    • Total Posts
      69k

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • cristiana
      Hi @aperlo34 Welcome to the forum. I am so sorry to read that you have been going through all of this.    Firstly, I should say that your experience of anxiety is very common, and also, the worsening of symptoms is also something we see reported quite a lot on this forum.  Achy joints, twitching as you describe and other symptoms were things I had and they all seemed to worsen for a while before they got better.  I am a coeliac based in the UK and here, unless we are extremely fortunate or pay for private treatment, we are tested for very few deficiencies - my iron was low, my B12 borderline normal and vitamin D borderline normal, but I have absolutely no doubt in my mind that had I had the full spectrum of vitamins and minerals tested, it would have shown deficiencies.  Your test reveals normal levels but it could well be you are lacking in something not on that list. My nutritionist at the time put me onto a broad spectrum supplement of every vitamin and mineral under the sun for a few months, until my GP said she thought there was too much Vitamin A in the pill so told me to stop taking it!  But one thing you could do is to take something similar which will address any deficiencies you are unaware of.   I would say one Vitamin which you could should supplement is Vitamin D.   Your lab reports show you are borderline normal, I'd say there is quite a lot of room for improvement there.   Symptoms of deficiency/low levels include:  Muscle pain, Bone pain, Increased sensitivity to pain, A tingly, “pins-and-needles” sensation in the hands or feet, Muscle weakness in body parts near the trunk of the body, such as the upper arms or thighs, Muscle twitches or tremors, Muscle spasms (source: https://www.yalemedicine.org/conditions/vitamin-d-deficiency) When I first joined this forum ten years ago or so, I found myself in the company of a lot of people complaining of twitches and spasms, and others who shared that it took a few months to clear (disappointing, but realistic!) which gave me hope that what I was encountering was temporary.  And indeed it was ...  it took a while but things did get better. As I mentioned earlier, anxiety is problem for many newly diagnosed coeliacs and when adrenaline is running through you it can exacerbate or even cause twitching and spasms.  This happened to me, my eyes twitched, my calves twitched etc.  Trying to understand the anxiety and what to do about it, I bought these two publications.  They helped me no end, and they may help you. https://www.amazon.co.uk/Depression-Cure-Six-Step-Programme-Without/dp/0091929814 (Yes, it says depression, but this book helps with anxiety, too, through physical exercise,  omega-3 fatty acids,  natural sunlight exposure,  restorative sleep, social connectedness and meaningful, engaging activity) https://anxietynomore.co.uk/product/at-last-a-life/ (Note, there is a lot of help on the anxietynomore website). So aside from the anxiety, the other thing you need to do is to keep away from gluten.  This will help you. I apologise for all the reading you have to do, but hopefully something will help. Lastly, did they test you for any thyroid issues, to which some coeliacs can be prone? Do come back to us if we can help further, and remember, there is a good chance that what you are experiencing is temporary.😊 Cristiana                  
    • trents
      Not being able to implement all elements of a discipline does not necessarily mean going through with the rest of it will not benefit you.
    • aperlo34
      Hi everyone, 29 years old, got my diagnosis in September. This has been the longest 2 months of my life. This was my first real dx and I wasn't having much for symptoms before (1x bad constipation, irregular BM schedule). I struggle with pretty bad health anxiety and I've been freaking out pretty consistently for 4+months (when I was told I needed a colonoscopy).  Basically since the colonoscopy was ordered in July, I started having small muscle twitching all over - this comes and goes but it's about 1 or 2 twitches every minute or so. I've also been super active this summer, riding 4k miles on my bike and accidentally losing 20lbs which I didn't really need to do. Since gluten free I've been all over the place diet/fitness/sleep wise and have had all sorts of weird symptoms: muscle twitching since July sinus(?) headaches since September extremely tired since October Dry eyes for the last 2 weeks worsening headaches in the morning especially and in the back of head/sinus area stiffness in body/neck/hands/joints general shakiness/weakness Vitamins levels from last week: Magnesium 2.3 (ref 1.6-2.3) B12 406 (ref 232-1245) Vit D 43.6 (ref 40-100) Folate 11.4 Glucose 84 (ref 70-99) Ferritin 117 (ref 30-400) Iron Sat 48 (ref 15-55) It's hard for me to know what is and isn't celiac related, and every rabbit hole I go down online leads me to horrible places. I'm just hoping there is some sort of light at the tunnel and that one day I'm going to feel better. I felt great until this diagnosis (as far as I could tell). Does anyone have any experience being relatively asymptomatic and then feeling like complete trash after gluten-free?    Thank you so much.
    • glucel
      I was checking aip diet and discovered that aspirin is prohibited. I definitely can understand why that is but my cardio dr says to stay on it. So aip is done before I even get started.
    • cristiana
      You are more than welcome.  I think there are quite a lot of different types out there, my own nutritionist was a v. highly qualified scientist as well, but at least you can see what qualifications they are which seem to be quite well stated.  I wish you all well on your son's coeliac journey. Cristiana
×
×
  • Create New...