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

Treating Symptoms While Waiting For Testing?


pricklypear1971

Recommended Posts

pricklypear1971 Community Regular

Ok, need help.

Son is showing rapid degradation in GI symptoms and we are having blood drawn next week, GI appt. early Oct. I can't take him off gluten, so I need advice to help with stomach aches, cramping, "hot flashes", and now chronic D.

Advice?

Giving him probiotics and crackers to snack on.


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



Celiac.com Sponsor (A8-M):



GottaSki Mentor

Oh I am sorry...

My son has good luck with digestive enzymes helping with minor / CC type glutenings - might help a bit. Ginger ale helps my kids, but bothers me -- I do make a tea with ginger root that helps my stomach aches.

Not sure if he has been consuming a large quantity of gluten - when I was researching gluten challenge for my other son - he hasn't done it yet - seems one slice of gluten bread per day is enough to use during the challenge. Don't know that there is a connection to symptoms with quantity, but might help to limit the quantity?

Although it is awful to have him sick - at least it confirms the need to be gluten free once he completes testing - Celiac Dx or not - gluten is making him ill :(

Hang in there!

pricklypear1971 Community Regular

Well, who knows if it's gluten. But what are the odds, right?

He does like mint tea. I'll try ginger and see.

He only gets gliten at school or when out. Until yesterday, when I bought him junky gluten food. The D, etc. was going strong before that, though.

I'll see if digestive enzymes work, but I'm wondering if those will break down the gluten???

GottaSki Mentor

My mistake...I thought he was gluten-free before and you were challenging.

Sure hope you find answers for him!

pricklypear1971 Community Regular

No, we've kept him on it since his labs came back negative last year.

He's having a problem with something. Definitely.

GottaSki Mentor

So hard when they test negative - not knowing if symptoms are related to gluten or something else...my kids were all teenager or adult when I was finally dx'd. One that tested negative decided on his own to go gluten-free shortly after me to see if he could improve major GERD that never got help with meds along with frequent flu type episodes -- his health improved gluten-free so he never went back on it -- well he did have a couple intentional glutenings during his senior year - he got extremely ill each time so he stopped "cheating" within the first year.

mamaupupup Contributor

Thinking of you!!! My kids had other symptoms--but it was so hard to keep them on gluten for the testing.

I would add the following:

- Make sure he's getting lots of fluids since D can be dehydrating. We have all grown to like/feel comforted with aloe juice (our Costco now carries it in addition to Whole Foods, etc.).

- One of our daughters responded positively to a low fat, low sugar, lactose free diet. Her belly was a WRECK from Celiac/gluten. It seems like removing fats helped her a bunch.

- I liked having my belly rubbed.

- One daughter liked a cold pack for her belly.

- A hot water bottle might give him some comfort.

- Frankly, anything to get his mind off his poor belly...I would do anything for the next month to help the little guy...a designated "all you can watch" month on PBS? Lots of books on tape (worked well for one daughter). A bin full of new art supplies?

I hope some of this helps!

Also, do try try try to keep a food log and symptom log. I often took pics of meals on my iphone and then wrote everything down at the end of the day. This may help you/doctors/nutritionist figure out the puzzle.

Sending hugs!


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



Celiac.com Sponsor (A8-M):



Persei V. Enthusiast

Some teas are able to calm down upset stomaches, however, I'm afraid the ones I know have not very pleasant tastes. I agree that you should have them as much distracted as possible, as well as having plenty of liquids to cope with D.

Keep their diet healthy and light, as well, with things easy to digest.

pricklypear1971 Community Regular

Well, it looks like he may have had a stomach bug.

Because I think I have a stomach bug.

What are the odds my symptoms are the same as his, right after his, and these kinds of symptoms are not consistent with my gluten symptoms?

He had gluten symptoms before the bug, just not as steady and as severe. His D was periodic, some vomiting, cramping before. The bug is just a magnification of his previous symptoms.

Anyway, the D has stopped but he still has cramping and food isn't terribly attractive.

Now I have it. Feels like I ate Junior Mints. Yuck.

GottaSki Mentor

Darn it - hoping you both feel better very soon :)

mamaupupup Contributor

Feel better!

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 Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    2. - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    3. - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

    4. 0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

    5. - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

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

    • Total Members
      133,336
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • Upcoming Events

  • Posts

    • knitty kitty
      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
×
×
  • 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.