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
pricklypear1971
Posted

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
GottaSki
Posted

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
pricklypear1971
Posted
  • Author

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
GottaSki
Posted

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

Sure hope you find answers for him!

pricklypear1971 Community Regular
pricklypear1971
Posted
  • Author

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
GottaSki
Posted

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
mamaupupup
Posted

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
Persei V.
Posted

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
pricklypear1971
Posted
  • Author

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
GottaSki
Posted

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

mamaupupup Contributor
mamaupupup
Posted

Feel better!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • 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. asaT
      - asaT replied to wellthatsfun's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      nothing has changed

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get...
    2. nanny marley
      - nanny marley replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me I tryed lol , another was to have another blood test after...
    3. asaT
      - asaT replied to Scott Adams's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      45

      Supplements for those Diagnosed with Celiac Disease

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel. they offered me an endoscopic biopsy ...
    4. par18
      - par18 replied to Woodster991's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      9

      Is it gluten?

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test...
    5. SilkieFairy
      - SilkieFairy replied to SilkieFairy's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      7

      IBS-D vs Celiac

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have...
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,342
    • Most Online (within 30 mins)
      7,748
    Muhammad
    Newest Member
    Muhammad
    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

    • asaT
      nothing has changed

      By asaT · Posted

      Scott, I am mostly asymptomatic. I was diagnosed based on high antibodies, low ferritin (3) and low vitamin D (10). I wasn't able to get in for the biopsy until 3 months after the blood test came back. I was supposed to keep eating gluten during this time. Well why would I continue doing something that I know to be harmful for 3 more months to just get this test? So I did quit gluten and had the biopsy. It was negative for celiacs. I continued gluten free with iron supps and my ferritin came back up to a reasonable, but not great level of around 30-35.  Could there be something else going on? Is there any reason why my antibodies would be high (>80) with a negative biopsy? could me intestines have healed that quickly (3 months)?  I'm having a hard time staying gluten free because I am asymptomatic and i'm wondering about that biopsy. I do have the celiacs gene, and all of the antibody tests have always come back high. I recently had them tested again. Still very high. I am gluten free mostly, but not totally. I will occasionally eat something with gluten, but try to keep to a minimum. It's really hard when the immediate consequences are nil.  with high antibodies, the gene, but a negative biopsy (after 3 months strict gluten-free), do i really have celiacs? please say no. lol. i think i know the answer.  Asa
    • nanny marley
      IBS-D vs Celiac

      By nanny marley · Posted

      I have had a long year of testing unfortunately still not diagnosed , although one thing they definitely agree I'm gluten intolerant, the thing for me I have severe back troubles they wouldnt perform the tests and I couldn't have a full MRI because I'm allergic to the solution , we tryed believe me  I tryed lol , another was to have another blood test after consuming gluten but it makes me so bad I tryed it for only a week, and because I have a trapped sciatic nerve when I get bad bowels it sets that off terribly so I just take it on myself now , I eat a gluten free diet , I'm the best I've ever been , and if I slip I know it so for me i have my own diagnosis  and I act accordingly, sometimes it's not so straight forward for some of us , for the first time in years I can plan to go out , and I have been absorbing my food better , running to the toilet has become occasionally now instead of all the time , i hope you find a solution 🤗
    • asaT
      Supplements for those Diagnosed with Celiac Disease

      By asaT · Posted

      I was undiagnosed for decades. My ferritin when checked in 2003 was 3. It never went above 10 in the next 20 years. I was just told to "take iron". I finally requested the TTgIgA test in 2023 when I was well and truly done with the chronic fatigue and feeling awful. My numbers were off the charts on the whole panel.  they offered me an endoscopic biopsy 3 months later, but that i would need to continue eating gluten for it to be accurate. so i quit eating gluten and my intestine had healed by the time i had the biopsy (i'm guessing??). Why else would my TTgIgA be so high if not celiacs? Anyway, your ferritin will rise as your intestine heals and take HEME iron (brand 4 arrows). I took 20mg of this with vitamin c and lactoferrin and my ferritin went up, now sits around 35.  you will feel dramatically better getting your ferritin up, and you can do it orally with the right supplements. I wouldn't get an infusion, you will get as good or better results taking heme iron/vc/lf.  
    • par18
      Is it gluten?

      By par18 · Posted

      Scott, I agree with everything you said except the term "false negative". It should be a "true negative" just plain negative. I actually looked up true/false negative/positive as it pertains to testing. The term "false negative" would be correct if you are positive (have anti-bodies) and the test did not pick them up. That would be a problem with the "test" itself. If you were gluten-free and got tested, you more than likely would test "true" negative or just negative. This means that the gluten-free diet is working and no anti-bodies should be present. I know it sounds confusing and if you don't agree feel free to respond. 
    • SilkieFairy
      IBS-D vs Celiac

      By SilkieFairy · Posted

      I realized it is actually important to get an official diagnosis because then insurance can cover bone density testing and other lab work to see if any further damage has been done because of it. Also, if hospitalized for whatever reason, I have the right to gluten-free food if I am officially celiac. I guess it gives me some legal protections. Plus, I have 4 kids, and I really want to know. If I really do have it then they may have increased risk. 
×
×
  • 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.