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 Celiac.com!
    eNewsletter
    Donate

Need Some Help


mike2184

Recommended Posts

mike2184 Rookie

Been gluten-free for 8 weeks now, no diagnosis. First 6 weeks I was getting glutened an average of about once a week - have not been glutened in 2 weeks. As a precursor, I have had normal bloodwork except for a lower than average potassium level - and normal MRI's. I am currently taking 2000 mcg B12 per day, a vitamin C tablet a day, and a multi a day - all gluten free.

Positives and Issues that have resolved

Only get D after glutening - I have tested dairy, soy, you name it. If I don't get glutened - no D.

No more colds - Pre gluten-free, I was getting a cold about every 3 weeks, haven't had one since May.

No more sinus problems - have had this my entire life until going gluten-free.

No brain fog since June - even when I have been glutened. My brain fog was more like dizziness, so I'm wondering if it was more neurological.

Sensory neuropathy is gone. I had a mild sensory neuropathy to temperature in my fingers and toes. This is now back to normal.

Joint weakness has improved. My feet and legs used to hurt so bad at the end of a workday that I would have to lie down. Now, it is pretty much back to normal.

Negatives and Issues that have not resolved

I still get a slight numbness in my hands and feet from time to time. It has definitely improved - if it was a level 5 on a scale of 1-10 before, it is now about a 2. It is never more than one hand or one foot at a time. I also have noticed a sporadic numbness in my back and left side of my face as well, which is also very slight and only occurs when there is no tingling in feet/hands. The back/face tingling never occurred until I went gluten-free.

I sometimes have a slight stomach ache after eating. I can't pin it to a specific food/foods, and it always goes away within an hour or so.

Any suggestions or advice would be welcome. I have noticed so many improvements that I am confident that I am on the right track. I don't know if the symptoms I still have are part of a natural healing process or if there is something else I should be doing.

Thanks.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



queenofhearts Explorer
I still get a slight numbness in my hands and feet from time to time. It has definitely improved - if it was a level 5 on a scale of 1-10 before, it is now about a 2. It is never more than one hand or one foot at a time. I also have noticed a sporadic numbness in my back and left side of my face as well, which is also very slight and only occurs when there is no tingling in feet/hands. The back/face tingling never occurred until I went gluten-free.

Actually you are ahead of me! I've been gluten-free ~2 months & just beginning to feel better. One thing that helped me, & sounds like it might help you as well, is magnesium. See this link:

Open Original Shared Link

Hope it helps!

Leah

for some reason I can't get it to go to the post I wanted, so you'll have to scroll down to SandraB's post

Link to comment
Share on other sites
mike2184 Rookie
Actually you are ahead of me! I've been gluten-free ~2 months & just beginning to feel better. One thing that helped me, & sounds like it might help you as well, is magnesium. See this link:

Open Original Shared Link

Hope it helps!

Leah

for some reason I can't get it to go to the post I wanted, so you'll have to scroll down to SandraB's post

Leah,

Thank you for the link. I am off to the drugstore to get a Magnesium supplement (gluten-free of course). I too have had a chocolate craving since being gluten-free. I will be interested to see if I notice a difference.

Glad you are feeling better.

Mike

Link to comment
Share on other sites
ravenwoodglass Mentor
Leah,

Thank you for the link. I am off to the drugstore to get a Magnesium supplement (gluten-free of course). I too have had a chocolate craving since being gluten-free. I will be interested to see if I notice a difference.

Glad you are feeling better.

Mike

Pick up some heavy duty B vitamins also. Sublingual B12 may be of particular help with the neuro issues. Make sure your vitamins and other meds are gluten-free and also all toiletries, lotions, girlfreinds lipstick :) et al.

Link to comment
Share on other sites
elye Community Regular

Glad you're on the right track! Sounds like you're proactive and really know what you're doing, so I'm sure you know the answer to this: do you have blood sugar issues? I know that one symptom I get when my BS is unexplicably high is a slight tingling on one side of my face. Tingling lips are very often present with HYPOglycemia, as well, but you would definitely know if low blood sugars were happening due to all the sudden, more alarming symptoms. Just a thought.... :)

Link to comment
Share on other sites
daffadilly Apprentice

Mike, I used to get tingling of the face (slightly) & the ends of my fingers (very aggravating) from black pepper. Check out the night shade foods

re tummy ache when after eating something. My guess is that you are either getting cross contamination or you are eating something that you have an intolerance or allergy to.

Sounds a lot to me like you have some other food intolerance going on. There are a lot of us that cannot eat potatoes, besides the common dairy, soy, & corn thing.

If you are eating any gluten free baked goods, I encourage you to try not to eat them on a daily basis, most all that stuff is cross contaminated (my opinion from my own experiences). For newbies I recommend Lundberg Rice chips (use like a cracker) & Mission Brand White Corn Tortillas.

re cross contamination: if you are cooking at home if the kitchen is not completely gluten-free the worse offending thing is the flour canister, when flour is used it poofs up in the air & gets in your lungs & your tummy via breathing thru your mouth, & the dust gets on everything. Did you clean out your kitchen? Potential cross contaminates are: cutting board, wooden spoons, teflon pans, iron skillets, old toasters, potholders, rolling pins, crumbs in the silverware drawer, crumbs in the butcher knife rack, old cookie & cake pans - toss or use parchment paper, etc

congrats on doing so well with the diet :)

Link to comment
Share on other sites
rinne Apprentice
If you are eating any gluten free baked goods, I encourage you to try not to eat them on a daily basis, most all that stuff is cross contaminated (my opinion from my own experiences). For newbies I recommend Lundberg Rice chips (use like a cracker) & Mission Brand White Corn Tortillas.

I also feel like I have been glutened when I eat the store bought gluten free treats and thanks for the top about the Mission Brand tortillas.

Link to comment
Share on other sites

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
      121,088
    • Most Online (within 30 mins)
      7,748

    Aventine
    Newest Member
    Aventine
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.3k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Anmol
      Thanks this is helpful. Couple of follow -ups- that critical point till it stays silent is age dependent or dependent on continuing to eat gluten. In other words if she is on gluten-free diet can she stay on silent celiac disease forever?    what are the most cost effective yet efficient test to track the inflammation/antibodies and see if gluten-free is working . 
    • trents
      Welcome to the community forum, @Anmol! There are a number of blood antibody tests that can be administered when diagnosing celiac disease and it is normal that not all of them will be positive. Three out of four that were run for you were positive. It looks pretty conclusive that you have celiac disease. Many physicians will only run the tTG-IGA test so I applaud your doctor for being so thorough. Note, the Immunoglobulin A is not a test for celiac disease per se but a measure of total IGA antibody levels in your blood. If this number is low it can cause false negatives in the individual IGA-based celiac antibody tests. There are many celiacs who are asymptomatic when consuming gluten, at least until damage to the villous lining of the small bowel progresses to a certain critical point. I was one of them. We call them "silent" celiacs".  Unfortunately, being asymptomatic does not equate to no damage being done to the villous lining of the small bowel. No, the fact that your wife is asymptomatic should not be viewed as a license to not practice strict gluten free eating. She is damaging her health by doing so and the continuing high antibody test scores are proof of that. The antibodies are produced by inflammation in the small bowel lining and over time this inflammation destroys the villous lining. Continuing to disregard this will catch up to her. While it may be true that a little gluten does less harm to the villous lining than a lot, why would you even want to tolerate any harm at all to it? Being a "silent" celiac is both a blessing and a curse. It's a blessing in the sense of being able to endure some cross contamination in social settings without embarrassing repercussions. It's a curse in that it slows down the learning curve of avoiding foods where gluten is not an obvious ingredient, yet still may be doing damage to the villous lining of the small bowel. GliadinX is helpful to many celiacs in avoiding illness from cross contamination when eating out but it is not effective when consuming larger amounts of gluten. It was never intended for that purpose. Eating out is the number one sabotager of gluten free eating. You have no control of how food is prepared and handled in restaurant kitchens.  
    • knitty kitty
      Forgot one... https://www.hormonesmatter.com/eosinophilic-esophagitis-sugar-thiamine-sensitive/
    • trents
      Welcome to the forum community, @ekelsay! Yes, your tTG-IGA score is strongly positive for celiac disease. There are other antibody tests that can be run when diagnosing celiac disease but the tTG-IGA is the most popular with physicians because it combines good sensitivity with good specificity, and it is a relatively inexpensive test to perform. The onset of celiac disease can happen at any stage of life and the size of the score is not necessarily an indicator of the progress of the disease. It is likely that you you experienced onset well before you became aware of symptoms. It often takes 10 years or more to get a diagnosis of celiac disease after the first appearance of symptoms. In my case, the first indicator was mildly elevated liver enzymes that resulted in a rejection of my blood donation by the Red Cross at age 37. There was no GI discomfort at that point, at least none that I noticed. Over time, other lab values began to get out of norm, including decreased iron levels. My PCP was at a complete loss to explain any of this. I finally scheduled an appointment with a GI doc because the liver enzymes concerned me and he tested me right away for celiac disease. I was positive and within three months of gluten free eating my liver enzymes were back to normal. That took 13 years since the rejection of my blood donation by the Red Cross. And my story is typical. Toward the end of that period I had developed some occasional diarrhea and oily stool but no major GI distress. Many celiacs do not have classic GI symptoms and are "silent" celiacs. There are around 200 symptoms that have been associated with celiac disease and many or most of them do not involve conscious GI distress. Via an autoimmune process, gluten ingestion triggers inflammation in the villous lining of the small bowel which damages it over time and inhibits the ability of this organ to absorb the vitamins and minerals in the food we ingest. So, that explains why those with celiac disease often suffer iron deficiency anemia, osteoporosis and a host of other vitamin and mineral deficiency related medical issues. The villous lining of the small bowel is where essentially all of our nutrition is absorbed. So, yes, anemia is one of the classic symptoms of celiac disease. One very important thing you need to be aware of is that your PCP may refer you to a GI doc for an endoscopy/biopsy of the small bowel lining to confirm the results of the blood antibody testing. So, you must not begin gluten free eating until that is done or at least you know they are going to diagnose you with celiac disease without it. If you start gluten free eating now there will be healing in the villous lining that will begin to take place which may compromise the results of the biopsy.
    • Anmol
      Hello all- my wife was recently diagnosed with Celiac below are her blood results. We are still absorbing this.  I wanted to seek clarity on few things:  1. Her symptoms aren't extreme. She was asked to go on gluten free diet a couple years ago but she did not completely cut off gluten. Partly because she wasn't seeing extreme symptoms. Only bloating and mild diarrhea after a meal full of gluten.  Does this mean that she is asymptomatic but enormous harm is done with every gram of gluten.? in other words is amount gluten directly correlated with harm on the intestines? or few mg of gluten can be really harmful to the villi  2. Why is she asymptomatic?  3. Is Gliadin X safe to take and effective for Cross -contamination or while going out to eat?  4. Since she is asymptomatic, can we sometimes indulge in a gluten diet? ----------------------------------------------------------------------------------------------- Deamidated Gliadin, IgG - 64 (0-19) units tTG IgA -  >100 (0-3) U/ml tTG IgG - 4   (0-5) Why is this in normal range? Endomysial Antibody - Positive  Immunoglobulin A - 352 (87-352) ------------------------------------------------------------------------------------------------ Thanks for help in advance, really appreciate! 
×
×
  • Create New...