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, Feeling Lousy?


Circetay

Recommended Posts

Circetay Newbie

Hi, this is my first post here so i'm sorry if I don't do it properly. I am struggling with a few things and wasn't sure where to turn, and i'm hoping someone can help me.

A little bit about me, i'm 30, was diagnosed with Crohns at 19 and have been successfully controlling it with immune suppressant drugs. My mom recently found out that shes gluten/soy/casein/egg sensitive and has tested myself and my little sister. We have both come back as having gluten sens and an autoimmune reaction (my sis has Crohns as well). I have also struggled with depression since I was a teenager and have been on meds for that too.

I have been eating gluten free (or trying, I make mistakes too) for the past week or so. The first day or two I felt great and then the last 4 days or so I feel terrible. I have bad stomach pains, sore lower back and feel nauseous much of the time. I also get severe cramping, like with Diarrhea but nothing happens. I find that I am in the bathroom every 15 mins or so. It is vaguely reminiscient of my Crohn's flares. I also find that my emotions are flat and that I am very spacey.

I know that everyone reacts differently to going Gluten free but is this all stuff that I can expect to get better? My mom has told me to try to stay away from the other allergens (and I am currently being tested for them), and also to eat when I get my intense cramping, that that seems to help her.

At this poing I am feeling so lousy that I'm prepared to give up, I mean I felt way better when I was eating Gluten. I know that it's doing internal damage but with 2 small children to care for, i'm really really struggling.

Any help is greatly appreciated.


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



Celiac.com Sponsor (A8-M):



ShayFL Enthusiast

Soy and Dairy....they are the nail in the tire for most of us. :( I would cut them out for now.

cindy lou Newbie

I'm sorry you're having such a hard time with it, but please don't quit! I agree, I have trouble with casein and lactose (not pure whey isolate however), some nuts, and unfermented soy (tempeh seems okay for me, at least, but everyone is different). I also don't digest the "typical" gluten-free staples like rice, corn, or potatoes very well. I can eat sweet potatoes and fresh corn in very small quantities.

Get checked for additional food reactions- you could have other strong allergies/intolerances or just a case of "leaky gut" where you are reacting poorly to many foods while your body is trying to heal gluten damage. As far as managing a family at the same time, make sure you A) manage your stress and breathe, and B) try switching to naturally gluten free, dairy free, soy free, nut free low glycemic staples like quinoa, lentils, and beans (if you can handle beans, many cannot). The high fiber:carb ratio makes these options low glycemic, they are low fat (combine w/ extra virgin olive oil for optimal benefit), and best of all they have decent protein. This will provide many of the nutrients your body needs to heal while also feeding your family healthy foods. Quinoa is really versatile to cook and quick- 15 mins as opposed to rice (50 mins) or potatoes (depends on size). I am not a fan of sugar and especially fake sugar- many "convenience" gluten-free foods you will find are more expensive and packed with sugar, which is why I stick to real food. I have a gluten-free df food and health blog since I had to (and still do) deal with the same issues it sounds like you're having. I wish you the best of luck, and I recommend you stick to it. Post as often as you need, join a support group (bring your kids if you can), and don't feel alone. Best,Cindy

GFinDC Veteran

You might want to think about cutting out yeast also. This study showed that some Crohn's patients had reactions to yeast, antibodies to it on their blood. One of my brothers had Crohns. I have celiac but am also sensitive to yeast. I just figured that out recently in fact. It makes my ankles swell.

Open Original Shared Link

Second, twins who had developed Crohn's disease displayed higher antibody titres towards yeast cell wall mannan in particular, but also to whole yeast (Saccharomyces cerevisiae) of all antibody types (IgA, IgG, and IgM).

glutenfreegirl Enthusiast

I am like you I am on day 2 of gluten-free and feel worse than I did before I have that rumbling thing going on too, feel very anxious and asthma like what the heck is that??

i too feel like what the heck am I doing I know in the long run they keep saying it will be worth it but right now I am soo down and depressed Ugh I need a good cookie!!!! gluten-free of course:)

hope it helps to know you are not alone.

Big hugs

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
      133,040
    • Most Online (within 30 mins)
      7,748

    marlee h
    Newest Member
    marlee h
    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.