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

Is The Gf Diet Not Working?


bessiejay

Recommended Posts

bessiejay Newbie

Hi. Im new and so happy to have found this board. I feel like the gluten-free diet isnt working for me. Ok a little background, I am 22 and just graduated college. Ive always had stomach aches, gas, and heartburn, but, about a year ago I started throwing up, bad stomach cramps and having diahreah for about a week every three months. One time I actually passed out. Doctors tested me for my liver gallbladder and anemia. All looked good and it was commented on how high my iron levels were for a girl my age. I also have been diagnosed with ADD and have had horrible leg pains, like growing pains my whole life. Is that something too?

Just recently a doctor suggested that I try a gluten-free diet. I got the test and my IGG i believe was positive, the rest negative, so she said try it out and see if it is worth it. I have been for the last week and i have still had stomach aches after everything i eat, and gas. Today i actually threw up again and had horrible cramping. I have been so careful that none of this makes sense. Can anyone relate to this? Am I diagnosed wrong?

I am really at a loss of hope right now. Does it get worse before it gets better? Please help me understand anyone. Thanks -Bessie


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



Celiac.com Sponsor (A8-M):



Guest aramgard

Bessie, Are you also eliminating dairy? Many Celiac's need to eliminate dairy when first going on to the diet. After a few months, you should be able to add dairy back, a little at a time. Also you have not been on the diet long enough to show significant progress. Slow down, eat basic foods, don't vary too much at first. Read labels carefully. For instance most dry cereals contain barley malt, which is a no-no. Eat very simply at first and add new foods one at a time every 3 or 4 days. This may be difficult, but it's certainly better than needing to take medication or being desperately ill all of the time. Good luck, Shirley

Guest jhmom

Hi Bessie, I am not sure if you already have these gluten-free food list or not but I know they were very helpful to me when I was first diagnosed:

Open Original Shared Link

Open Original Shared Link

seeking-wholeness Explorer

Bessie,

I agree with Shirley that you need to give the gluten-free diet a bit longer before you decide it's not working. Also, what foods are you eating right now? Gluten can hide in SO many strange places (including in some brands of WHITE RICE, I just discovered--sometimes the vitamins they spray on the rice to "enrich" it are derived from barley!). Are you taking any supplements or medications that may contain gluten? What about your shampoo, conditioner, hair spray, and make-up? It sounds to me like there may be some hidden gluten somewhere in your life, and if you can track it down and kick it out, you just might start to feel better in short order. Good luck to you!

bessiejay Newbie

Hi again and thanks everyone! Well, Im not a "celiac" yet just gluten intolerance i think and my doc wants me to see if it is worth going gluten-free. I have not eliminated dairy and have had alot of it and feel fine after wards. No reaction.

I dont understand how careful i need to be, like shampoo or conditioner? I do take medicine for ADD. I take Adderall and should find out about whats in that. Is it possible to get gluten ingested by just being around it? I work at a preschool and am constantly around crackers and flour play dough and who knows what other glutenous items.

I agree that i need to give it more time. I think i just panicked after i threw up.

Im also very afraid of gaining weight as I have been anorexic/bulimic in the past. Is it true that there is a lot of weight gain in this diet? I may post that question in the weight place to find out as well as a question about Adderall else where.

thanks for the food lists, they have helped out a lot! Thanks for letting me figure things out as well. -Bessie

seeking-wholeness Explorer

Bessie,

If you work in an environment that contains a lot of gluten, I would suggest washing your hands frequently and being especially thorough about it right before you eat. Gluten-containing dust can be transferred hand-to-mouth, and all it would take is a tiny amount to make you sick. Similarly, shampoo and conditioner can end up in your mouth, especially if you stick your head in the shower stream to rinse you hair. It is better to avoid gluten whenever you possibly can, just to be safe! I hope this helps!

gaceff Newbie

Bessie, one thing is for sure: in your case, some sort of diet is recommanded.

Avoid any products that are complex in nature, and go for the simplest foods possible: rice, carrots, chicken meat, all boiled.

In 3 weeks examine the effect of the diet.


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



Celiac.com Sponsor (A8-M):



YankeeDB Contributor

Bessie, regarding your medications, I would suggest calling your pharmacy and explaining you have a gluten allergy and asking them to investigate whether or not there is gluten in them. Good luck!

gaceff Newbie

You need not be too paranoid in your endeavour, like examining shampoos or every product that you use for other purpose; just pay attention at foods, and generally try to eat everything made in the house, simple.

It does take a while (>1month) with ups and some downs before the gluten-free diet shows full efficiency.

ham&ex Rookie

I am 19 and have been gluten-free for over two years now and I am still healing. I am actually steadily loosing weight and gaining muscle and the texture of my skin and hair has improved tremendously. Speaking of hair, gluten IS often in shampoos, conditioners, soaps, lotion, makeup, nail polish etc and YOU DO HAVE TO BE CAREFUL (not paranoid) and make sure all of these items are safe for use.

You should also consider other intolerances, but it can take a while before you really begin to see changes. Also, know that some people feel worse before they feel better since the body can go through a sort of withdrawal period, as happened to me.

I would avoid mainstream products altogether for a while and really do your research as to what is okay and what is not. As far as makeup, toiletries etc. are concerned I've had some success with Burt's Bees, Tom's of Maine and Johnson & Johnson (baby shampoos,) but I always contact the companies for a list and a statement before I use anything since they do make some gluten containing products.

My general rules for food are as follows:

-If it don't say "gluten-free" don't eat it. That applies to anything prepackaged. Sometimes companies won't put it right on the label, but have it on their websites instead; look around.

-Still eat healthfully. You can be completely gluten-free and still be unhealthy if you don't eat regular well rounded meals and snacks.

-Be VERY cautious if eating out. It's best to bring a little something with if you go out with friends and stick to wine and water. Otherwise it's Russian Roulette.

-Be festidious about crumbs. They're not as innocent as they look and they can't be killed like a germ so avoid them like they're worse than the plague.

-Stand up for yourself. Don't let people talk you into eating anything. You wouldn't drink diluted bleach because someone told you it was lemonade.

-Don't worry about how you appear to others. Thirty years ago people were laughing at people who were allergic to peanuts; thirty years from now we'll be laughing at the people who laughed at us.

-Act nonchalant. Act as carefree as possible while still being mindful.

-SHARE with others. Find some gluten-free foods or products you like and share them, normally, with others. It can really help others accept your dietary needs.

-"When in doubt leave it out"

Good luck (and as far as gluten in concerned: Good riddence!), Solveig.

Guest aramgard

For those of you who have a problem with fragrances in shampoos, try California Baby supersensitive shampoo. It's terribly expensive, but it goes a long way and you don't need cream rinse. It doesn't have lauryl sulfate in it either which some of us, including me, are allergic too. Shirley

bessiejay Newbie

I would have written sooner but my internet has been down.

Thank you all so much. Im still afraid im not taking this seriously enough. It has been about a month and besides that one vomiting episode I have been ok. I havent noticed much of a difference besides stomach aches and bowel movements.

I think I am just too scared to be too careful. Does that make sense? I have already cut out so much and am eating so many "safe" foods that I dont think i could do anything else. Im starting to see problems with going on vacation or even simply to a friends house for the weekend. I feel so guilty for some reason, like they have to be so careful of me. So, I tell them no and just stay home.

One of my friends didnt get that she had to be careful adding spices to our guacamole dip. She instinctively went for the cabinet and after she sprikled in the first one I caught her and told her she couldnt just do that anymore. She looked so annoyed and kinda rolled her eyes as i checked the pepper label. Was I out of my mind? Have I gone to far or is this normal? After that incident I decided i needed to cool down and have been pretty relaxed ever since. I guess im so confused because at the same time, Im so uptight!

Anyone feel like this also? Thanks again. -Bessie

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

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

    • Total Members
      133,034
    • Most Online (within 30 mins)
      7,748

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

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):
  • 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.