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

Help Please


Guest Nukapai

Recommended Posts

celiac3270 Collaborator

After vomiting, it's impossible to get the taste out of your mouth by brushing -- you still taste it in your throat. Usually I would drink a softdrink like Sunkist to wash the taste away, but I'm trying to avoid the sugar/carbonation combination, so I tried an altoid (gluten-free)........it happened to be the peppermint kind and it actually helped a little with the stomach......so, peppermint does help -- even when it's not in a tea, but in a small pill-sized altoid.


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Sorry for all the problems you are dealing with right now. I had almost all the same problems from childhood on. I was even getting IV's of iron 3 times a week because I was so anemic. Once diagnosed though I learned that gluten isn't my only enemy. Steer clear of oats, barley, anything malted (lots of rice things are), caramel color and Red 40. I know it sounds daunting, but I'm healthy now. I go in for my 1st check up in 2 years tonight so I guess I'll find out if my diet has paid off. As far as the pain goes try benadryl one that makes you drowsy, the sleeping makes it more bearable. Go to an Asian market or a natural foods store and find rice noodles. They're easier to cook than spaghetti, taste good w/ butter or a sauce if you can find one that is gluten-free and they taste good without making you sick. Also, applesauce is good. Steer clear of ordering out or a lot of microwaveable foods until you get your results. Good Luck and remember this is nothing compared to a lot of other things you could have. Atleast we can still have sugar!

Guest Nukapai

That's so sweet, jendenise :)

I have to just hang in there, going to see the doctor and discuss blood test results/next steps on Monday.

I still get sick when I try to eat more than a couple of handfuls of food at a time and even stuff that doesn't make my stomach burn still kind of comes out as diarrhea. EW.

I am frightened that there will just be no diagnosis and I get told "oh, it's just your nerves" or "IBS" because that will NOT help.

Private medical care might be the only option, but I will persevere with the NHS for now. See what the doc says on Monday.

jendenise Rookie

Well, I doubt if it's nerves, but it could very well be IBS or if it is celiac disease maybe you'rre accidentally eating things that are still bothering you. It takes a few months for the lining of your stomach to heal maybe milk/dairy is harming you too or acidic foods. Try starchy foods like baked potatoes, or white rice (with or without sugar or preserves) and maybe try to drink rice milk for a while the vanilla flavor isn't too bad for short term. Good luck though, I wish you the best, let me know how it turns out!

coin-op Newbie

to respond to the original post - your diet is out of control. Look at the safe and forbidden lists on this site for the basics of the gluten-free diet. READ INGREDIENTS. if you keep abusing your body, you will become critically ill, and that's no joke.

-cass

Guest ~wAvE WeT sAnD~

To Coin-Op: Oh, and I just wanted to add, from the diary post, a website called "milksucks.com" does NOT sound like a credible source.

jerickson Newbie

Does anybody have any good ideas for lunches to bring to work? I've been bringing cottage cheese with pears/peaches, rice cakes with peanut butter, but I'm looking for some new ideas to break up the monotony. Any suggestions?


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



Celiac.com Sponsor (A8-M):



jendenise Rookie

Do you have a microwave? If so go to Amys.com they hace gluten-free foods that taste really good. But not all of them are so make sure you double check before purchasing. Also, if you like tuna mix some up in a bowl with whatever you like in it (for me it's mayo pickles & onions) and take a little salad, use the tuna as your dressing, or take tuna w/ rice crackers. Egg salad w/ rice flour bread or tapioca flour bread is good too! Good Luck

tarnalberry Community Regular

I had leftovers for lunch last week, so it was chicken cacciatore, bean salad, and chili salmon stir-fry. And veggies, of course. :-) And soy yogurt (I'm dairy free).

You might try sitting down one weekend and brainstorming ideas... I found that really helped remind me of all the things I could take for lunch.

Guest Nukapai

Well, I've had two out of three blood tests back. The two that came back were for acute infections/stomach bugs. Those were clear.

I've now lost 20.8 pounds (or 10kg) in five weeks.

Went to doc's today, he looked really worried, examined me thoroughly weighed me (and said, helpfully: well look at it positively, if you had started at 7 stone you'd be in hospital by now and you're still overweight so you are going to be okay for a while, gee, thanks) ...and I am now being tested for gall stones, liver problems, bacterial overgrowth and something else. Next blood test booked for a week from now. He is also sending me for an ultrasound.

The celiac test results hadn't come back yet. Got to wait for a couple more weeks for those. :blink:

  • 4 months later...
Guest Nukapai

Update: still ill, in fact, kept getting worse until about three weeks ago I had to be taken to A & E in an ambulance because I developed a really bad flare-up of whatever it is I have wrong with me. I have lost a total of 18kg (or just over 40 pounds) now in weight since I got sick. And it's still dropping.

I now have a GI consultant at the local hospital and my endoscopy/colonoscopy are due to be performed on the same day, 23rd of March. So still a while to wait.

I feel sore and horrible and tired.... and have had enough, really. But somehow I've got to hang in there.

Now the interesting thing is, that I had an Enterolab gene test done in the meantime and they said I do NOT have the gene for Celiac, but I DO have the gene for gluten intolerance! I don't know whether this makes me someone who falls into that weird category of having gluten intolerance, but no Celiac.

The consultant at the hospital is looking for Celiac too - but his main suspicion is actually Chrohn's disease. :huh:

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 pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    2. - knitty kitty replied to Jordan Carlson's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Fruits & Veggies

    3. - knitty kitty replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

    4. - trents replied to pothosqueen's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      16

      Positive biopsy

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

    • Total Members
      133,019
    • Most Online (within 30 mins)
      7,748

    Nancy Adams
    Newest Member
    Nancy Adams
    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
      In the study linked above, the little girl switched to a gluten free diet and gained enough weight that that fat pad was replenished and surgery was not needed.   Here's the full article link... Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pmc.ncbi.nlm.nih.gov/articles/PMC6476019/
    • knitty kitty
      Hello, @Jordan Carlson, So glad you're feeling better.   Tecta is a proton pump inhibitor.  PPI's also interfere with the production of the intrinsic factor needed to absorb Vitamin B12.  Increasing the amount of B12 you supplement has helped overcome the lack of intrinsic factor needed to absorb B12. Proton pump inhibitors also reduce the production of digestive juices (stomach acids).  This results in foods not being digested thoroughly.  If foods are not digested sufficiently, the vitamins and other nutrients aren't released from the food, and the body cannot absorb them.  This sets up a vicious cycle. Acid reflux and Gerd are actually symptoms of producing too little stomach acid.  Insufficient stomach acid production is seen with Thiamine and Niacin deficiencies.  PPI's like Tecta also block the transporters that pull Thiamine into cells, preventing absorption of thiamine.  Other symptoms of Thiamine deficiency are difficulty swallowing, gagging, problems with food texture, dysphagia. Other symptoms of Thiamine deficiency are symptoms of ADHD and anxiety.  Vyvanse also blocks thiamine transporters contributing further to Thiamine deficiency.  Pristiq has been shown to work better if thiamine is supplemented at the same time because thiamine is needed to make serotonin.  Doctors don't recognize anxiety and depression and adult onset ADHD as early symptoms of Thiamine deficiency. Stomach acid is needed to digest Vitamin C (ascorbic acid) in fruits and vegetables.  Ascorbic acid left undigested can cause intestinal upsets, anxiety, and heart palpitations.   Yes, a child can be born with nutritional deficiencies if the parents were deficient.  Parents who are thiamine deficient have offspring with fewer thiamine transporters on cell surfaces, making thiamine deficiency easier to develop in the children.  A person can struggle along for years with subclinical vitamin deficiencies.  Been here, done this.  Please consider supplementing with Thiamine in the form TTFD (tetrahydrofurfuryl disulfide) which helps immensely with dysphagia and neurological symptoms like anxiety, depression, and ADHD symptoms.  Benfotiamine helps with improving intestinal health.  A B Complex and NeuroMag (a magnesium supplement), and Vitamin D are needed also.
    • knitty kitty
      @pothosqueen, Welcome to the tribe! You'll want to get checked for nutritional deficiencies and start on supplementation of B vitamins, especially Thiamine Vitamin B 1.   There's some scientific evidence that the fat pad that buffers the aorta which disappears in SMA is caused by deficiency in Thiamine.   In Thiamine deficiency, the body burns its stored fat as a source of fuel.  That fat pad between the aorta and digestive system gets used as fuel, too. Ask for an Erythrocyte Transketolace Activity test to look for thiamine deficiency.  Correction of thiamine deficiency can help restore that fat pad.   Best wishes for your recovery!   Interesting Reading: Superior Mesenteric Artery Syndrome in a 6-Year-Old Girl with Final Diagnosis of Celiac Disease https://pubmed.ncbi.nlm.nih.gov/31089433/#:~:text=Affiliations,tissue and results in SMAS.  
    • trents
      Wow! You're pretty young to have a diagnosis of SMA syndrome. But youth also has its advantages when it comes to healing, without a doubt. You might be surprised to find out how your health improves and how much better you feel once you eliminate gluten from your diet. Celiac disease is an autoimmune disorder that, when gluten is consumed, triggers an attack on the villous lining of the small bowel. This is the section of the intestines where all our nutrition is absorbed. It is made up of billions of tiny finger-like projections that create a tremendous surface area for absorbing nutrients. For the person with celiac disease, unchecked gluten consumption generates inflammation that wears down these fingers and, over time, greatly reduces the nutrient absorbing efficiency of the small bowel lining. This can generate a whole host of other nutrient deficiency related medical problems. We also now know that the autoimmune reaction to gluten is not necessarily limited to the lining of the small bowel such that celiac disease can damage other body systems and organs such as the liver and the joints and cause neurological problems.  It can take around two years for the villous lining to completely heal but most people start feeling better well before then. It's also important to realize that celiac disease can cause intolerance to some other foods whose protein structures are similar to gluten. Chief among them are dairy and oats but also eggs, corn and soy. Just keep that in mind.
    • pothosqueen
×
×
  • 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.