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Help, Feeling Lousy?


Circetay

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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.


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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

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      Lectins are carbohydrate storage proteins.  Different plants have different lectins.  Gluten is a lectin, but not all lectins are gluten.   Lectins are made up of a protein "spine" with a bunch of carbohydrate molecules stuck to it.  During digestion, the carbohydrates get pulled off, but that protein "spine" can get stuck to cell membranes.  In Celiac, our immunity kicks on when exposed to gluten.  Gluten is made up of a string of polypeptides.  One particular segment in that string, the 33-mer segment, triggers our built-in celiac immunity to produce antibodies against it when it sticks to HLA DQ genes.  Unfortunately, our body makes tissue transglutaminase, used in cell membranes as support structures, which also contains segments of that 33-mer polypeptide.  The anti-tissue transglutaminase antibodies (ttg antibodies) attack the tissue transglutaminase on our cell surfaces, as well as the gluten in celiac disease.   In acquired immunity - our body gets sick once, learns to produce antibodies against the thing causing the illness, and "remembers" so it can make more antibodies against it if it's encountered again.   Our body can "learn" to attack those protein "spines" of lectins that may be stuck to cell surfaces.  To lessen the probability that the body will "learn" to attack other lectins in addition to the gluten lectin, avoiding all grains while the immune system is reacting to gluten is a great idea.   Lectins can be irritating to the gastrointestinal system.   Lectins can stimulate IgE (allergic) reactions.  Lectins can cause mast cells to release histamine. Lectins can be difficult to digest.  Lectins can be fermented by gastrointestinal bacteria and yeasts, causing gas, bloating and diarrhea or constipation.  Small Intestinal Bacterial Overgrowth and Candida overgrowth both have symptoms similar to Celiac Disease.  Corn lectins are more apt to be problematic than most other lectins.   Avoiding lectins in the early stages of going gluten free can help reduce other gastrointestinal symptoms and speed up recovery. I have a horrible response to corn, maize, zein.  I break out with Dermatitis Herpetiformis blisters if I consume corn or products made with corn derivatives.   But, there's no gluten in corn or other grains.  Gluten and that 33-mer polypeptide are only in barley, wheat and rye.  And some breeds of oats.   Try a low histamine, low carbohydrate, low Fodmap, grain free, Paleo diet like the Autoimmune Protocol Diet to see how much better you can feel.   It's not always gluten; the immune response is just going crazy.   https://pmc.ncbi.nlm.nih.gov/articles/PMC1115436/
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