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What To Eat!? I'm Going Crazy :(

CeliacFashionista

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CeliacFashionista Apprentice
CeliacFashionista
Posted

I have been okay with eating gluten free but now I am trying to go on a low iodine diet to cure my DH. I need some type of candy that I CAN eat because this is driving me crazy!! I am almost to the point of suicide because of this disease and I don't think I can hold on much longer if things don't get better. Please someone help!!

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Kim69 Apprentice
Kim69
Posted

Whereabouts in the world are you? It looks like you are from USA from your use of the word candy. I have never heard of a low iodine diet do I googled it (and DH). I hope the lid helps you. I am sorry that you have to be on this diet. I found this website that says you can have dark chocolate, marshmallow, hard candy, jellies (tho according to the site I found no red dye is allowed), Popsicles. Could you make or buy a vegan gluten-free cake? I have made chocolate cake before that is gluten-free and vegan. The egg substitute powder would need checking. But apparently u can have cocoa at least :)

rosetapper23 Explorer
rosetapper23
Posted

You can eat all See's candies except those that have hard frosting on them (like Easter eggs). That means everything in the display case is fine to eat. My favorite is the Butterscotch Square. Nestle's chocolate chips are gluten free as are Reese's Peanut Butter Cups, Hershey Bars, and a lot of Trader Joe's chocolates. Actually, there are quite a few candies we can eat. Do you like ice cream? Haagen Dazs (sp?), Breyer's, Dreyer's, Double Rainbow, Ben and Jerry's, and Baskin-Robbins are gluten free as long as they don't list wheat in them (such as Cookies and Cream).

If you're following a low-iodine diet, you only have to avoid iodized salt, salty snacks, seafood, dairy, and asparagus. Otherwise, you can eat practically everything else that is gluten free. However, I would avoid most processed foods. I suffer from DH, and candy has never really been an aggravating food. If you're feeling practically suicidal, I think chocolate is really needed in your life (lots of calming chemicals).

GottaSki Mentor
GottaSki
Posted

I am not familiar with the low iodine diet. Others have made suggestions for sweet treats, hopefully you can purchase some things to help get you through the rough patches of changing your diet.

Do you have someone to talk to regarding how tough your dietary changes / health problems have been on you which led to the statement about suicide? Sibling? Parent? Friend? Pastor/Priest? Counselor/Therapist?

If you are having suicidal thoughts, please, please talk to someone.

Metoo Enthusiast
Metoo
Posted

My undiagnosed DH drove me nuts!

I didn't go totally iodine free, but I did things like strictly avoided eggs, and limited dairy. It definitly seemed to help, but it still took me over 5 weeks to get mine to stop having my skin peel off and hurt!

I also switched to all gluten free soaps, lotions and shampoos.

My 'gluten' reactions in terms of stomach stuff, or fatigue is nothing compared to what the little patch of skin on my hand does...it litterally drove me nuts and just continued to be painful and peel off skin down to raw flesh for over 5 weeks the last time I got glutened. The skin alone is what keeps me from eating gluten. I am terrified, nor do I know exactly how much gluten would make me break out again.

lovegrov Collaborator
lovegrov
Posted

If you truly have DH and it's truly driving you nuts, consider dapsone for a while (if you haven't tried it already). I know that the side effect warnings scare some but it's better than suicide. I took it for more than 20 years when DH was my only symptom and I didn't know about celiac.

richard

CeliacFashionista Apprentice
CeliacFashionista
Posted
  • Author

Thank you Guys so much for all your help! I was sent to the ER last because my eye has swollen up and they gave me prednisone to help with the swelling. Hopefully it will help the Dh as well. It sucks because I get the worst of it on my face and most doctors believe its just really bad cystic acne and aren't willing to treat it as anything else. Is prednisone unsafe to take for emergencies? I don't break out in DH daily but the scars are what bother me most. I really want to eat chocolate but I think dairy is the biggest trigger. Maybe I will try dark chocolate to see if thats better. Thank you again! I don't know what I would do without this forum.

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    • SamAlvi
      High TTG-IgG and Normal TTG-IgA

      By SamAlvi · Posted

      Thanks again for the detailed explanation. Just to clarify, I actually did have my initial tests done while I was still consuming gluten. I stopped eating gluten only after those tests were completed, and it has now been about 70 days since I went gluten-free. I understand the limitations around diagnosing NCGS and the importance of antibody testing and biopsy for celiac disease. Unfortunately, where I live, access to comprehensive testing (including total IgA and endoscopy with biopsy) is limited, which makes things more complicated. Your explanation about small-bowel damage, nutrient absorption, and iron-deficiency anemia still aligns closely with my history, and it’s been very helpful in understanding what may be going on. I don't wanna get Endoscopy and I can't start eating Gluten again because it's hurt really with severe diarrhea.  I appreciate you taking the time to share such detailed and informative guidance. Thank you so much for this detailed and thoughtful response. I really appreciate you pointing out the relationship between anemia and antibody patterns, and how the high DGP IgG still supports celiac disease in my case. A gluten challenge isn’t something I feel safe attempting due to how severe my reactions were, so your suggestion about genetic testing makes a lot of sense. I’ll look into whether HLA testing is available where I live and discuss it with my doctor. I also appreciate you mentioning gastrointestinal beriberi and thiamine deficiency. This isn’t something any of my doctors have discussed with me, and given my symptoms and nutritional history, it’s definitely worth raising with them. I’ll also ask about correcting deficiencies more comprehensively, including B vitamins alongside iron. Thanks again for sharing your knowledge and taking the time to help. I’ll update the forum as I make progress.
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Blood tests for thiamine are unreliable.  The nutrients from your food get absorbed into the bloodstream and travel around the body.  So, a steak dinner can falsely raise thiamine blood levels in the following days.  Besides, thiamine is utilized inside cells where stores of thiamine are impossible to measure. A better test to ask for is the Erythrocyte Transketolace Activity test.  But even that test has been questioned as to accuracy.  It is expensive and takes time to do.   Because of the discrepancies with thiamine tests and urgency with correcting thiamine deficiency, the World Health Organization recommends giving thiamine for several weeks and looking for health improvement.  Thiamine is water soluble, safe and nontoxic even in high doses.   Many doctors are not given sufficient education in nutrition and deficiency symptoms, and may not be familiar with how often they occur in Celiac disease.  B12 and Vitamin D can be stored for as long as a year in the liver, so not having deficiencies in these two vitamins is not a good indicator of the status of the other seven water soluble B vitamins.  It is possible to have deficiency symptoms BEFORE there's changes in the blood levels.   Ask your doctor about Benfotiamine, a form of thiamine that is better absorbed than Thiamine Mononitrate.  Thiamine Mononitrate is used in many vitamins because it is shelf-stable, a form of thiamine that won't break down sitting around on a store shelf.  This form is difficult for the body to turn into a usable form.  Only thirty percent is absorbed in the intestine, and less is actually used.   Thiamine interacts with all of the other B vitamins, so they should all be supplemented together.  Magnesium is needed to make life sustaining enzymes with thiamine, so a magnesium supplement should be added if magnesium levels are low.   Thiamine is water soluble, safe and nontoxic even in high doses.  There's no harm in trying.
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Neither of them were anemic 6 months after the Celiac diagnosis. His other vitamin levels (d, B12) were never low. My daughters levels were normal after the first 6 months. Is the thiamine test just called thiamine? 
    • knitty kitty
      Son's legs shaking

      By knitty kitty · Posted

      Yes, I do think they need a Thiamine supplement at least. Especially since they eat red meat only occasionally. Most fruits and vegetables are not good sources of Thiamine.  Legumes (beans) do contain thiamine.  Fruits and veggies do have some of the other B vitamins, but thiamine B 1 and  Cobalamine B12 are mostly found in meats.  Meat, especially organ meats like liver, are the best sources of Thiamine, B12, and the six other B vitamins and important minerals like iron.   Thiamine has antibacterial and antiviral properties.  Thiamine is important to our immune systems.  We need more thiamine when we're physically ill or injured, when we're under stress emotionally, and when we exercise, especially outside in hot weather.  We need thiamine and other B vitamins like Niacin B 3 to keep our gastrointestinal tract healthy.  We can't store thiamine for very long.  We can get low in thiamine within three days.  Symptoms can appear suddenly when a high carbohydrate diet is consumed.  (Rice and beans are high in carbohydrates.)  A twenty percent increase in dietary thiamine causes an eighty percent increase in brain function, so symptoms can wax and wane depending on what one eats.  The earliest symptoms like fatigue and anxiety are easily contributed to other things or life events and dismissed.   Correcting nutritional deficiencies needs to be done quickly, especially in children, so their growth isn't stunted.  Nutritional deficiencies can affect intelligence.  Vitamin D deficiency can cause short stature and poor bone formation.   Is your son taking anything for the anemia?  Is the anemia caused by B12 or iron deficiency?  
    • lizzie42
      Son's legs shaking

      By lizzie42 · Posted

      Thank you! That's helpful. My kids eat very little processed food. Tons of fruit, vegetables, cheese, eggs and occasional red meat. We do a lot of rice and bean bowls, stir fry, etc.  Do you think with all the fruits and vegetables they need a vitamin supplement? I feel like their diet is pretty healthy and balanced with very limited processed food. The only processed food they eat regularly is a bowl of Cheerios here and there.  Could shaking legs be a symptom of just a one-time gluten exposure? I guess there's no way to know for sure if they're getting absolutely zero exposure because they do go to school a couple times a week. We do homeschool but my son does a shared school 2x a week and my daughter does a morning Pre-K 3 x a week.  At home our entire house is strictly gluten free and it is extremely rare for us to eat out. If we eat at someone else's house I usually just bring their food. When we have play dates we bring all the snacks, etc. I try to be really careful since they're still growing. They also, of course, catch kids viruses all the time so I  want to make sure I know whether they're just sick or they've had gluten. It can be pretty confusing when they're pretty young to even be explaining their symptoms! 
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