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Frustrated, Hungry And Need Help Super Sensitive People Please Respond


littletsunshine

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littletsunshine Newbie

I have been attempting gluten-free for 2 weeks now. Some days go really well and others not so good. I dont have instant reaction to anything gluten but eventually end up with symptoms. Food diarys dont do any good cause I cant possibly tell when something is affecting me when it came from. Ive read every lable and millions of posts, replies from companies you name it but I am at the end of my rope.

I know I am allergic(epi-pen worthy) to Sulfites. So that is out!

I know Im lactose Intolerant have been dealing with that for 20 years(100%lactose free skim milk and I get along)

And Now dr said Celiac so gluten free. Yey easier said than done!

I dread eating now cause I can never find anything safe. I live in Montana and we have one store that is slightly usefull if you happen to have 5X the grocery money you used to have.(Montana groceries are outragous already, my mom freaked when she heard the prices here) We almost never get anything fresh except what is grown here(which isnt a whole lot unless you eat grass hay and even that has shortages)

So here it is. I need to know your totally failsafe foods. Preferably mainstream cause otherwise....chances are it doesnt exist here. I do have a supposed gluten free list from "the good food store" but I can only afford limited number of items there. For example Annies mac and cheese at walmart(our absolute cheapest store) was 1.28 last i checked Its almost $4 at Good food store. (Just imagine what specialty foods are like there ouch) yey so I know we cant have mac and cheese but it was just a price I knew of the top of my head. The Albertsons if they carried it would be about 2.50 cause well they all suck here, just walmart controls prices better/national chain etc) And if you say eat basic food like meat etc, know that literally almost every form of meat here has been processed or frozen somewhere else. Thus the failsafe list. Im tired, hungry and gettting no where.

HELP!


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jststric Contributor

I have found that the prices of those specialty items don't differ between Walmart and more upscale stores such as Whole Foods. So, price comparing is kind of a waste of time. THe biggest problem is supply. I have found that the same prices are found ONLINE also but you can find amazing things you'll never see in the few stores here/there. I think the people that live in the major metro areas are probably the most fortunate to actually find the items in their stores and having the specialty stores. Look on www.(Company Name Removed - They Spammed This Forum and are Banned) and look for gluten-free foods under grocery. There are also ads on this board of other websites that offer foods you can order. Look for the links on all the websites to find more. As for foods......I find it easiest to stay away (for the most part) from processed things and simply eat whole, real foods. Meats, veggies, fruits and grains that you may need to learn more about. I cannot do the dairies also or rice or beans. Rice and beans are often the base to alternative gluten-free items, so I'm screwed. Yes, you miss some of the things you are used to loving, but after awhile, all the pain and suffering you go thru to have these items, its just not worth it anymore. Best wishes! I envy you living in Montana......the beauty has got to be worth SOME of the higher prices. : )

dilettantesteph Collaborator

Get things that you can wash carefully before eating. Fresh is best, but not necessary, if you can wash canned. I can't eat very many of the specialty items. Especially ones containing grains. They are all out. Once you get healthy, you will be able to see which things you can add back into your diet. Don't they even have bananas there?

dilettantesteph Collaborator

Lundberg rice is good, but I do wash it. You can mail order it if you don't have it locally.

YoloGx Rookie

I am very sensitive too -- and have discovered that I needed to go off all grains as well as all fruit except for lemons and of course no sugary anything (I use stevia instead; you could order it online and/or grow it). I also avoid all nuts--and sesame. I eat a lot of sunflower seeds instead. I avoid tomatoes, potatoes and green peppers--the nightshade family. I eat meat (lots of chicken--frozen is OK) and lots of green vegetables. I use roots and squash as my carbohydrates. Its actually pretty cheap to eat this way. I grow summer squash in summer.

I eat a lot of nonfat organic yogurt. Some say its best to make yogurt yourself--something you could do in Montana or wherever.

For a while I ate the various alternative grains (quinoa, teff, amaranth, buckwheat etc.) and did a bunch of baking, but -- though better-- I still suffered from eczema, tiredness and bloating even though I ate no gluten.

So, basically, doing it backwards as it seems I often do, I have arrived at the Specific Carbohydrate Diet overall. You might want to check into it. It seems many of the "sensitives" here have found success with it when all else fails. Its also a great way to clean out when you first go on the no gluten diet or happen to get CC'd (cross contaminated from gluten). Plus further its very inexpensive to buy basic food that you prepare for yourself from scratch this way and readily available most anywhere one could live. Just make a bunch at once and freeze the rest in various meal sized containers.

I will say I now feel healthier than I have ever felt.

So--good luck with your new adventure!

Bea

PS--in Montana can't you have your own chickens?

oceangirl Collaborator

As others have noted, your best bet is to buy whole foods and cook from scratch. Most of the super sensitives on here seem to eat relatively close to the Specific Carbohydrate diet- no substitute grains. I would think you could find some meats out in Montana? Buy whole cuts, chicken and any fresh fish? Butternut squash, acorn, zucchini, summer squash- all very good. Bananas are good. Some of us eat nuts- I eat Planter's almonds, cashews and macadamias, but you may need to wait 'til you heal a bit. Sweet potatoes are very good. I avoid most nightshade vegetables (white potatoes, eggplant- look up in web) I also can eat no rice or legumes.

I would avoid all "replacement foods" as they generally don't work for supersensitives. 4 years in I have added dairy back in the form of Greek plain yogurt and Cabot cheddar cheese- you may need to cut out dairy at first.

Cook yourself some plain chicken and squash first. All veggies will be good eventually but you may find cooking helps at first. (cooked spinach, swiss chard, squash...)

Take it slow and easy, one new food at a time and keep a detailed food log with symptoms- it's invaluable. I've done this for nearly five years and it's second nature to me now and it takes no time- and that's while raising two teenagers, working full-time teaching Special education to emotionally disabled teens and being in graduate school all at the same time, so- you can do it! It has helped solve mysteries MANY times!

Good luck and good health to you! Keep reading here- it helps.

lisa

daphniela Explorer

There is a few lists online. You will need to check labels to ensure the foods are still gluten free.

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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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