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Fear Of Food

GF Lover

By GF Lover
in Coping with Celiac Disease

Recommended Posts

Kate79 Apprentice
Kate79
Posted

I've gone through a minor form of this - mostly post-glutening - where I just don't want to eat anything for a few weeks and it's all I can do to eat a meal or a few snacks a day. It's not the same level as what your experiencing, but I can sympathize with what you're going through. If you have less of a problem with liquids, I'd recommend smoothies and maybe broths or more drinkable liquid soups - like tomato or pureed squash - as many have done above.

I also have a more unorthodox suggestion - I have no idea what state you live in or what your views are on the matter - but, if it's an option where you live, you might want to consider talking to your doc about medical marijuana. I make the suggestion because it can increase appetite and lower anxiety levels. It did wonders for a friend of mine who had lost her appetite and was suffering nausea due to chemotherapy - and also had the side benefit of helping her deal better with her cancer diagnoses.

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shadowicewolf Proficient
shadowicewolf
Posted

I can see that. At my worst i would only eat chex, apples with peanutbuter, a veggie of some sort, and chicken broth cooked rice. :( Its not fun. I slowly expanded outward. Now my diet has a bit more variety i think :)

JNBunnie1 Community Regular
JNBunnie1
Posted

I've gone through a minor form of this - mostly post-glutening - where I just don't want to eat anything for a few weeks and it's all I can do to eat a meal or a few snacks a day. It's not the same level as what your experiencing, but I can sympathize with what you're going through. If you have less of a problem with liquids, I'd recommend smoothies and maybe broths or more drinkable liquid soups - like tomato or pureed squash - as many have done above.

I also have a more unorthodox suggestion - I have no idea what state you live in or what your views are on the matter - but, if it's an option where you live, you might want to consider talking to your doc about medical marijuana. I make the suggestion because it can increase appetite and lower anxiety levels. It did wonders for a friend of mine who had lost her appetite and was suffering nausea due to chemotherapy - and also had the side benefit of helping her deal better with her cancer diagnoses.

I second this suggestion whole-heartedly. Of course, I would NEVER suggest that someone do something ILLEGAL...... not me, no sir. But weed works, baby. Makes you hungry and you don't have anxiety about eating either. Just have food ready beforehand that's safe.

IrishHeart Veteran
IrishHeart
Posted

I second this suggestion whole-heartedly. Of course, I would NEVER suggest that someone do something ILLEGAL...... not me, no sir. But weed works, baby. Makes you hungry and you don't have anxiety about eating either. Just have food ready beforehand that's safe.

I was thinking along the same lines. Chemo patients benefit from medicinal marijuana, however, some people get more depressed and anxious from it.

Proceed with caution.

JNBunnie1 Community Regular
JNBunnie1
Posted

I was thinking along the same lines. Chemo patients benefit from medicinal marijuana, however, some people get more depressed and anxious from it.

Proceed with caution.

^ She has a point. (She usually does....)

:D

shadowicewolf Proficient
shadowicewolf
Posted

Have you tried theraphy animals? They can be very helpful. My own toy poodle, for example, knows when something is wrong and tries to calm us down by doing very silly thing (despite her age of 14). Sometimes those who cannot talk are the ones that are the most helpful.

megsybeth Enthusiast
megsybeth
Posted

I hope you're doing better. Have you tried pudding? I made a huge batch of rice pudding last night and it's something I find really soothing. I don't have the same fear of foods but prior to diagnosis I had to force myself to eat and found texture is a big issue. I also think there is something soothing about those soft textures. Right now you need to baby yourself and literal baby food might help.

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DavinaRN Explorer
DavinaRN
Posted

That's interesting. My therapist said I was controlling this because everything else was out of my control.

So then you gave yourself a max you had to eat and that would put you back in control because the disease doesn't get what it wants either, correct?

Correct, since most food issues such as this are a control issue. I just switched what I controlled. I started at 500/day then each week added another 100/day until I was at 1200.

GF Lover Rising Star
GF Lover
Posted
  • Author

Thanks all for the great suggestions and advice. I'm gonna use the timer idea. I think with the two bite rule I will fill little baggies with the food. Then I can just grab one. Ive started the smoothie with protein powder. Hubs is gonna make me batches of soup starting with chicken and rice today. I feel full just typing this.

I found out yesterday that they got all the cancer in my leg but it has already gone to the lymph nodes in the groin. Plan is to remove all the nodes on the left side groin area and the interferon treatment which lasts a year. I've read that alot of the patient's going thru are not able to finish the treatment because of the side effects. I think all of your suggestions are gonna be invaluable during that treatment.

Thank you all again. You are the ones who keep me motivated and focused on my health. I appreciate every one of you!

Be Well

Colleen

IrishHeart Veteran
IrishHeart
Posted

Just take one step at a time. We're here for you.

When will they do the lymph nodes, Colleen?

GF Lover Rising Star
GF Lover
Posted
  • Author

Just take one step at a time. We're here for you.

When will they do the lymph nodes, Colleen?

They are going to schedule the surgery and call me with the appointment. I will see a different oncologist for the interferon treatment, they will call with that appointment time also.

GF Lover Rising Star
GF Lover
Posted
  • Author

Have you tried theraphy animals? They can be very helpful. My own toy poodle, for example, knows when something is wrong and tries to calm us down by doing very silly thing (despite her age of 14). Sometimes those who cannot talk are the ones that are the most helpful.

I have two toy yorkies. The oldest on knows me like a book. If I am in serious distress he even barks so hubs knows. I agree, some dogs are totally connected to you. My little guy is the best.

shadowicewolf Proficient
shadowicewolf
Posted

Oh good :)

They help so much when you need to talk to someone who won't judge you and whatnot. I often, when i'm at home, kidnap my little one and take her upstairs to lay down with me. She gives me the most funny looks when i start talking to her lol.

GFinDC Veteran
GFinDC
Posted

Hi Collen,

You may actually be full when eating small amounts of food. It could be your stomach has shrunk some from not eating a lot of food. That would make you feel full sooner than normal as your stomach is actually smaller. That can change though if you eat larger mwals regularly. Stretch that sucker back out! Another thing that can make you feel full is having a lot of gas in your stomach. That can really make it hard to eat and make you feel full in just a few bites, or even one. If you are gassy peppermint tea can help to get it out.

Please take some time and watch this TED talk video by William Li. He talks about anti-angiogenesis and cancer treatment. It turns out some foods we eat have potent anti-angiogenesis effects in the body.

Open Original Shared Link

There is also a non-profit org set up to help people learn to eat cancer fighting foods, called Eat to Defeat Cancer.

Open Original Shared Link

Open Original Shared Link

Um, about the therapist, I am a little skeptical of her/his opinion. What else would they say after all? Of course they are going to say it is a psych problem. It could be you are having a perfectly normal aversion to something that makes you feel bad sometimes. Eating. That is not a strange thing at all for peolpe with digestrive disease, and makes perfect sense. When you are sick and feel bad after eating, it is natural and normal to somewhat avoid that situation. Nobody likes being sick. I bet your therapist would do the same darn thing if they got sick when eating food.

You are trying to find a way around the situaiton, to fix it,. and that is good. You know you need to do something and that is a healthy attitude. High calorie foods are a good choice to help you out until your stomach gets better. I agree with eliminating the sodas, as they are mostly sugar and can cause you to have blood sugar swings, especially if you are not eating much protein. Protein helps even out your blood sugar levels and is important to include in your diet..

GF Lover Rising Star
GF Lover
Posted
  • Author

gluten-free,

Great links, definitely helpful. Also, I am starting to turn my thinking around. Looking at it like a treatment for cancer. This diagnosis has really opened my eyes to the benefit of diet and exercise to lengthen survival rates. And I'm all for that.

Dicussing my issue with you guys after trying to ignore it has helped so much. I can't thank everyone enough.

Sending Chakra energies to all, Colleen

GFinDC Veteran
GFinDC
Posted

That's great Colleen. Plenty of those foods could be a big help. Their diet is not gluten-free, so watch out for that, But mostly they reccommend whole food items. Yep, pack in some anti-angiogenesis foods every day if you can. Eat to get well, and feel full too. Not a bad plan at all. :)

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      Gluten free nuts

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    • Aretaeus Cappadocia
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      By Aretaeus Cappadocia · Posted

      I wanted to respond to your post as much for other people who read this later on (I'm not trying to contradict your experience or decisions) > Kirkland Signature Super Extra-Large Peanuts, 2.5 lbs, are labeled "gluten free" in the Calif Costcos I've been in. If they are selling non-gluten-free in your store, I suggest talking to customer service to see if they can get you the gluten-free version (they are tasty) > This past week I bought "Sliced Raw Almonds, Baking Nuts, 5 lbs Item 1495072 Best if used by Jun-10-26 W-261-6-L1A 12:47" at Costco. The package has the standard warning that it was made on machinery that <may> have processed wheat. Based on that alone, I would not eat these. However, I contacted customer service and asked them "are Costco's Sliced Almonds gluten free?" Within a day I got this response:  "This is [xyz] with the Costco Member Service Resolutions Team. I am happy to let you know we got a reply back from our Kirkland Signature team. Here is their response:  This item does not have a risk of cross contamination with gluten, barley or rye." Based on this, I will eat them. Based on experience, I believe they will be fine. Sometimes, for other products, the answer has been "they really do have cross-contamination risk" (eg, Kirkland Signature Dry Roasted Macadamia Nuts, Salted, 1.5 lbs Item 1195303). When they give me that answer I return them for cash. You might reasonably ask, "Why would Costco use that label if they actually are safe?" I can't speak for Costco but I've worked in Corporate America and I've seen this kind of thing first hand and up close. (1) This kind of regulatory label represents risk/cost to the company. What if they are mistaken? In one direction, the cost is loss of maybe 1% of sales (if celiacs don't buy when they would have). In the other direction, the risk is reputational damage and open-ended litigation (bad reviews and celiacs suing them). Expect them to play it safe. (2) There is a team tasked with getting each product out to market quickly and cheaply, and there is also a committee tasked with reviewing the packaging before it is released. If the team chooses the simplest, safest, pre-approved label, this becomes a quick check box. On the other hand, if they choose something else, it has to be carefully scrutinized through a long process. It's more efficient for the team to say there <could> be risk. (3) There is probably some plug and play in production. Some lots of the very same product could be made in a safe facility while others are made in an unsafe facility. Uniform packaging (saying there is risk) for all packages regardless of gluten risk is easier, cheaper, and safer (for Costco). Everything I wrote here is about my Costco experience, but the principles will be true at other vendors, particularly if they have extensive quality control infrastructure. The first hurdle of gluten-free diet is to remove/replace all the labeled gluten ingredients. The second, more difficult hurdle is to remove/replace all the hidden gluten. Each of us have to assess gray zones and make judgement calls knowing there is a penalty for being wrong. One penalty would be getting glutened but the other penalty could be eating an unnecessarily boring or malnourishing diet.
    • trents
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By trents · Posted

      Thanks for the thoughtful reply and links, Wheatwacked. Definitely some food for thought. However, I would point out that your linked articles refer to gliadin in human breast milk, not cow's milk. And although it might seem reasonable to conclude it would work the same way in cows, that is not necessarily the case. Studies seem to indicate otherwise. Studies also indicate the amount of gliadin in human breast milk is miniscule and unlikely to cause reactions:  https://www.glutenfreewatchdog.org/news/gluten-peptides-in-human-breast-milk-implications-for-cows-milk/ I would also point out that Dr. Peter Osborne's doctorate is in chiropractic medicine, though he also has studied and, I believe, holds some sort of certifications in nutritional science. To put it plainly, he is considered by many qualified medical and nutritional professionals to be on the fringe of quackery. But he has a dedicated and rabid following, nonetheless.
    • Scott Adams
      Has anyone had terrible TMJ/ Jaw Pain from undiagnosed Celiac?

      By Scott Adams · Posted

      I'd be very cautious about accepting these claims without robust evidence. The hypothesis requires a chain of biologically unlikely events: Gluten/gliadin survives the cow's rumen and entire digestive system intact. It is then absorbed whole into the cow's bloodstream. It bypasses the cow's immune system and liver. It is then secreted, still intact and immunogenic, into the milk. The cow's digestive system is designed to break down proteins, not transfer them whole into milk. This is not a recognized pathway in veterinary science. The provided backup shifts from cow's milk to human breastmilk, which is a classic bait-and-switch. While the transfer of food proteins in human breastmilk is a valid area of study, it doesn't validate the initial claim about commercial dairy. The use of a Dr. Osborne video is a major red flag. His entire platform is based on the idea that all grains are toxic, a view that far exceeds the established science on Celiac Disease and non-celiac gluten sensitivity. Extraordinary claims require extraordinary evidence, and a YouTube video from a known ideological source is not that evidence."  
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