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Have Trouble With So Many Foods


CantEvenEatRice

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CantEvenEatRice Enthusiast

Hi Everyone,

I was diagnosed with Celiac about 3 years ago and when I went on the diet, my symptoms improved dramatically. However, as time has passed, I have developed more and more problems with so many foods. I cannot eat dairy, soy, corn, tomatoes, bananas, beans, and now even rice! I feel so overwhelmed trying to figure out what to eat as well as why this is happening?! If I eat these foods, I usually react within 24 hours with bloating, cramps, painful gas, diarrhea and muscle aches. I am then tired for days. I suffer from a lot of fatigue in general, not as much as before the gluten free diet, but definitely more then I think I should at my age (28). Any help would be greatly appreciated!

Thank you so much!


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Ursa Major Collaborator

It sure sucks when your diet is so restricted. You sound like you may be intolerant to lectins. If you'd eliminate them all for a while, your energy level might improve. Check my lectin link in my signature for more information.

The bananas could be a problem because of high carb level, and/or mold I am told. Because even though theoretically I shouldn't be intolerant to them (they don't have lectins, salicylates or gluten), I cannot eat more than one a week without getting a mild allergic reaction (oral allergy syndrome).

Just to make this easier, here are the lectin groups: All grains (including rice and corn), all dairy, legumes (including soy and peanuts), eggs, and nightshades (potatoes, tomatoes, pepper, eggplant). Pepper includes ALL peppers, and paprika is made from a pepper.

It says that after staying away from all of those for about a year, most people will then end up being able to eat some of those again, and will be permanently intolerant to only one or two of those groups (I just wished that would happen to me <_< ). Of course, people with celiac disease and lectin intolerance will likely be intolerant to grains for the rest of their life at the least.

CantEvenEatRice Enthusiast

Thank you very much for your response. Can you give me some examples of what you eat? It seems very difficult to stay away from so many foods. I pretty much eat meat, potatoes and vegetables (except corn and tomatoes). Should I cut out potatoes even if I don't think I react to them? I would do anything to have more energy. I have been tired my whole life!

DingoGirl Enthusiast

Hello,

so sorry you're having trouble. You sound like many people on a very busy thread on this board - - don't be scared, it's over 300 pages long now, but I think you'd find the information in that very helpful (start at the beginning - - we've gotten more than a little silly now about midway and formed our own town, even :blink: - lots of laughs!). Some people on that thread have had to figure out so many things due to intolerances, maybe you could learn from their experiences. And no, you don't have to read the whole thing!

Good luck.

p.s. it's called "OMG I think I can eat dairy again" :)

CantEvenEatRice Enthusiast
Hello,

so sorry you're having trouble. You sound like many people on a very busy thread on this board - - don't be scared, it's over 300 pages long now, but I think you'd find the information in that very helpful (start at the beginning - - we've gotten more than a little silly now about midway and formed our own town, even :blink: - lots of laughs!). Some people on that thread have had to figure out so many things due to intolerances, maybe you could learn from their experiences. And no, you don't have to read the whole thing!

Good luck.

p.s. it's called "OMG I think I can eat dairy again" :)

Thanks Susan! I will check it out! I am so glad that I found this board. I was feeling pretty overwhelmed and lost!

Ursa Major Collaborator

I suggest you do what I did. I eliminated all lectins for a while, and then tried one group at a time to see if I'd react to them (two weeks apart so you don't miss delayed reactions). You may not be intolerant to all of them, or at least not for good.

You can still eat all fruits, most vegetables, nuts and seeds, all meat, and you can bake with non-grain flours like buckwheat, nut-flours, tapioca and arrowroot flour.

I would wait at least a month before trying any of the lectin foods again (other than gluten grains, of course, you won't outgrow that problem).

CantEvenEatRice Enthusiast
Hello,

so sorry you're having trouble. You sound like many people on a very busy thread on this board - - don't be scared, it's over 300 pages long now, but I think you'd find the information in that very helpful (start at the beginning - - we've gotten more than a little silly now about midway and formed our own town, even :blink: - lots of laughs!). Some people on that thread have had to figure out so many things due to intolerances, maybe you could learn from their experiences. And no, you don't have to read the whole thing!

Good luck.

p.s. it's called "OMG I think I can eat dairy again" :)

Susan, can you post a link to that thread? I must be looking in the wrong place. Thanks! ~Noelle

Susan, can you post a link to that thread? I must be looking in the wrong place. Thanks! ~Noelle

I just found it!


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CeliacStinksKLS Newbie

I'm sorry you're so restricted. I know it sucks, cause I can relate to you on the restricted part. I can ONLY eat soluable foods. Right now because of my stomach, I'm only on liquids and baby food. When I'm not having a hard time, I can add in other soluable foods, but it's not a big list. And not being able to eat gluten on top of every thing, I'm very restricted. Just gotta adapt the best you can.

KLS

sspitzer5 Apprentice

Hi,

Sorry that you are so restricted. I sure know how that feels. It's extremely frustrating.

I decided to do a 96 food igg test and FINALLY got it back. It shows that I have a huge reaction to almonds! Of course, I eat almonds every single day because they are in my gluten free bread. DOH.

I know not everyone thinks these test are accurate, but it might be worth it for you. I sure hope the almonds make a difference because I feel like I just can't take much more.

S

Lymetoo Contributor

You might also check into yeast or candida as a possible cause of your bloating and cramps, etc.

here is some info:

Candida diet and elimination:

Open Original Shared Link

Open Original Shared Link

Lyme symptoms list compared with yeast symptoms

Open Original Shared Link

"Successful control and elminiation of a Candida Albicans overgrowth requires a multifaceted program as described below. Failure to follow ALL the steps simultaneously will result in slow progress and will lengthen healing time significantly. The program should be tailored to the individual and must balance the need to eliminate the Candida and deprive it of its food source while insuring proper nutrition for the individual."

Five Steps to Candida Elimination:

1. You must starve it into submission by eliminating its food source.

2. You must kill it with anti-fungal herbs and supplements. [e.g....garlic, onion, caprylic acid, Pau D'Arco capsules or tea, clove, grapefruit seed extract, olive leaf extract, oil of oregano, tea tree oil, Echinacea, Goldenseal, black walnut, MSM, barberry root, uva ursi, neem leaf, biotin]

3. You must reestablish the proper balance and quantity of probiotic bacteria in the digestive tract. [...multi-strain lactobacillus acidophilus and bifidus capsules with FOS should be taken between meals to maximize repopulation of the digestive tract by beneficial bacteria.]

4. You must reestablish proper levels of all B vitamins (yeast free) and utilize other immune enhancing supplements to boost immune system function. [e.g ... B complex vitamins (yeast free), biotin, beta 1-3 glucan, colostrum, maitake mushroom, vitamins A, C, E, zinc and selenium]

5. You must cleanse and heal the digestive tract to promote proper elimination of toxins and Candida and assimilation of nutrients. [e.g...chlorophyll, MSM, omega 3 fatty acids found in flax seed and salmon oils, GLA found in borage, evening primrose and black currant oils. Pantothenic acid, digestive enzymes between meals]

CantEvenEatRice Enthusiast

Thank you for the responses. I am finding so much good information here. Lymetoo-I had Lyme Disease too and spent 6 months on iv antibiotics. They say you never really get rid of it though. I think the antibiotics messed up my stomach more. Did you go on iv meds?

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    • marion wheaton
      Thanks for responding. I researched further and Lindt Lindor chocolate balls do contain barely malt powder which contains gluten. I was surprised at all of the conflicting information I found when I checked online.
    • trents
      @BlessedinBoston, it is possible that in Canada the product in question is formulated differently than in the USA or at least processed in in a facility that precludes cross contamination. I assume from your user name that you are in the USA. And it is also possible that the product meets the FDA requirement of not more than 20ppm of gluten but you are a super sensitive celiac for whom that standard is insufficient. 
    • BlessedinBoston
      No,Lindt is not gluten free no matter what they say on their website. I found out the hard way when I was newly diagnosed in 2000. At that time the Lindt truffles were just becoming popular and were only sold in small specialty shops at the mall. You couldn't buy them in any stores like today and I was obsessed with them 😁. Took me a while to get around to checking them and was heartbroken when I saw they were absolutely not gluten free 😔. Felt the same when I realized Twizzlers weren't either. Took me a while to get my diet on order after being diagnosed. I was diagnosed with small bowel non Hodgkins lymphoma at the same time. So it was a very stressful time to say the least. Hope this helps 😁.
    • knitty kitty
      @Jmartes71, I understand your frustration and anger.  I've been in a similar situation where no doctor took me seriously, accused me of making things up, and eventually sent me home to suffer alone.   My doctors did not recognize nutritional deficiencies.  Doctors are trained in medical learning institutions that are funded by pharmaceutical companies.  They are taught which medications cover up which symptoms.  Doctors are required to take twenty  hours of nutritional education in seven years of medical training.  (They can earn nine hours in Nutrition by taking a three day weekend seminar.)  They are taught nutritional deficiencies are passe' and don't happen in our well fed Western society any more.  In Celiac Disease, the autoimmune response and inflammation affects the absorption of ALL the essential vitamins and minerals.  Correcting nutritional deficiencies caused by malabsorption is essential!  I begged my doctor to check my Vitamin D level, which he did only after making sure my insurance would cover it.  When my Vitamin D came back extremely low, my doctor was very surprised, but refused to test for further nutritional deficiencies because he "couldn't make money prescribing vitamins.". I believe it was beyond his knowledge, so he blamed me for making stuff up, and stormed out of the exam room.  I had studied Nutrition before earning a degree in Microbiology.  I switched because I was curious what vitamins from our food were doing in our bodies.  Vitamins are substances that our bodies cannot manufacture, so we must ingest them every day.  Without them, our bodies cannot manufacture life sustaining enzymes and we sicken and die.   At home alone, I could feel myself dying.  It's an unnerving feeling, to say the least, and, so, with nothing left to lose, I relied in my education in nutrition.  My symptoms of Thiamine deficiency were the worst, so I began taking high dose Thiamine.  I had health improvement within an hour.  It was magical.  I continued taking high dose thiamine with a B Complex, magnesium. and other essential nutrients.  The health improvements continued for months.  High doses of thiamine are required to correct a thiamine deficiency because thiamine affects every cell and mitochondria in our bodies.    A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function.  The cerebellum of the brain is most affected.  The cerebellum controls things we don't have to consciously have to think about, like digestion, balance, breathing, blood pressure, heart rate, hormone regulation, and many more.  Thiamine is absorbed from the digestive tract and sent to the most important organs like the brain and the heart.  This leaves the digestive tract depleted of Thiamine and symptoms of Gastrointestinal Beriberi, a thiamine deficiency localized in the digestive system, begin to appear.  Symptoms of Gastrointestinal Beriberi include anxiety, depression, chronic fatigue, headaches, Gerd, acid reflux, gas, slow stomach emptying, gastroparesis, bloating, diarrhea and/or constipation, incontinence, abdominal pain, IBS,  SIBO, POTS, high blood pressure, heart rate changes like tachycardia, difficulty swallowing, Barrett's Esophagus, peripheral neuropathy, and more. Doctors are only taught about thiamine deficiency in alcoholism and look for the classic triad of symptoms (changes in gait, mental function, and nystagmus) but fail to realize that gastrointestinal symptoms can precede these symptoms by months.  All three classic triad of symptoms only appear in fifteen percent of patients, with most patients being diagnosed with thiamine deficiency post mortem.  I had all three but swore I didn't drink, so I was dismissed as "crazy" and sent home to die basically.   Yes, I understand how frustrating no answers from doctors can be.  I took OTC Thiamine Hydrochloride, and later thiamine in the forms TTFD (tetrahydrofurfuryl disulfide) and Benfotiamine to correct my thiamine deficiency.  I also took magnesium, needed by thiamine to make those life sustaining enzymes.  Thiamine interacts with each of the other B vitamins, so the other B vitamins must be supplemented as well.  Thiamine is safe and nontoxic even in high doses.   A doctor can administer high dose thiamine by IV along with the other B vitamins.  Again, Thiamine is safe and nontoxic even in high doses.  Thiamine should be given if only to rule Gastrointestinal Beriberi out as a cause of your symptoms.  If no improvement, no harm is done. Share the following link with your doctors.  Section Three is especially informative.  They need to be expand their knowledge about Thiamine and nutrition in Celiac Disease.  Ask for an Erythrocyte Transketolace Activity test for thiamine deficiency.  This test is more reliable than a blood test. Thiamine, gastrointestinal beriberi and acetylcholine signaling.  https://pmc.ncbi.nlm.nih.gov/articles/PMC12014454/ Best wishes!
    • Jmartes71
      I have been diagnosed with celiac in 1994, in remission not eating wheat and other foods not to consume  my household eats wheat.I have diagnosed sibo, hernia ibs, high blood pressure, menopause, chronic fatigue just to name a few oh yes and Barrett's esophagus which i forgot, I currently have bumps in back of my throat, one Dr stated we all have bumps in the back of our throat.Im in pain.Standford specialist really dismissed me and now im really in limbo and trying to get properly cared for.I found a new gi and new pcp but its still a mess and medical is making it look like im a disability chaser when Im actively not well I look and feel horrible and its adding anxiety and depression more so.Im angery my condition is affecting me and its being down played 
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