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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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    • cristiana
      Feel like I’m starting over

      By cristiana · Posted

      Hi @Scatterbrain Thank you for your reply.   Some of these things could be weaknesses, also triggered by stress, which perhaps have come about as the result of long-term deficiencies which can take a long time to correct.   Some could be completely unrelated. If it is of help, I'll tell you some of the things that started in the first year or two, following my diagnosis - I pinned everything on coeliac disease, but it turns out I wasn't always right!  Dizziness, lightheaded - I was eventually diagnosed with cervical dizziness (worth googling, could be your issue too, also if you have neck pain?)  A few months after diagnosis I put my neck out slightly carrying my seven-year-old above my head, and never assigned any relevance to it as the pain at the time was severe but so short-lived that I'd forgotten the connection. Jaw pain - stress. Tinnitus - I think stress, but perhaps exacerbated by iron/vitamin deficiencies. Painful ribs and sacroiliac joints - no idea, bloating made the pain worse. It got really bad but then got better. Irregular heart rate - could be a coincidence but my sister (not a coeliac) and I both developed this temporarily after our second Astra Zeneca covid jabs.   Subsequent Pfizer jabs didn't affect us. Brain fog - a big thing for people with certain autoimmune issues but in my case I think possibly worse when my iron or B12 are low, but I have no proof of this. Insomnia - stress, menopause. So basically, it isn't always gluten.  It might be worth having your vitamins and mineral levels checked, and if you have deficiencies speak to your Dr about how better to address them?    
    • knitty kitty
      My only proof

      By knitty kitty · Posted

      @NanceK, I do have Hypersensitivity Type Four reaction to Sulfa drugs, a sulfa allergy.  Benfotiamine and other forms of Thiamine do not bother me at all.  There's sulfur in all kinds of Thiamine, yet our bodies must have it as an essential nutrient to make life sustaining enzymes.  The sulfur in thiamine is in a ring which does not trigger sulfa allergy like sulfites in a chain found in pharmaceuticals.  Doctors are not given sufficient education in nutrition (nor chemistry in this case).  I studied Nutrition before earning a degree in Microbiology.  I wanted to know what vitamins were doing inside the body.   Thiamine is safe and nontoxic even in high doses.   Not feeling well after starting Benfotiamine is normal.  It's called the "thiamine paradox" and is equivalent to an engine backfiring if it's not been cranked up for a while.  Mine went away in about three days.  I took a B Complex, magnesium and added molybdenum for a few weeks. It's important to add a B Complex with all eight essential B vitamins. Supplementing just one B vitamin can cause lows in some of the others and result in feeling worse, too.  Celiac Disease causes malabsorption of all the B vitamins, not just thiamine.  You need all eight.  Thiamine forms including Benfotiamine interact with each of the other B vitamins in some way.  It's important to add a magnesium glycinate or chelate supplement as well.  Forms of Thiamine including Benfotiamine need magnesium to make those life sustaining enzymes.  (Don't use magnesium oxide.  It's not absorbed well.  It pulls water into the intestines and is used to relieve constipation.)   Molybdenum is a trace mineral that helps the body utilize forms of Thiamine.   Molybdenum supplements are available over the counter.  It's not unusual to be low in molybdenum if low in thiamine.   I do hope you will add the necessary supplements and try Benfotiamine again. Science-y Explanation of Thiamine Paradox: https://hormonesmatter.com/paradoxical-reactions-with-ttfd-the-glutathione-connection/#google_vignette
    • Wheatwacked
      Related issues

      By Wheatwacked · Posted

      Your goal is not to be a good puppet, there is no gain in that. You might want to restart the ones that helped.  It sounds more like you are suffering from malnutrition.  Gluten free foods are not fortified with things like Thiamine (B1), vitamin D, Iodine, B1,2,3,5,6 and 12 as non-gluten free products are required to be. There is a Catch-22 here.  Malnutrition can cause SIBO, and SIBO can worsen malnutrition. Another possibility is side effects from any medication that are taking.  I was on Metformin 3 months before it turned me into a zombi.  I had crippling side effects from most of the BP meds tried on me, and Losartan has many of the side effects on me from my pre gluten free days. Because you have been gluten free, you can test and talk until you are blue in the face but all of your tests will be negative.  Without gluten, you will not create the antigen against gluten, no antigens to gluten, so no small intestine damage from the antigens.  You will need to do a gluten challange to test positive if you need an official diagnosis, and even then, no guaranty: 10 g of gluten per day for 6 weeks! Then a full panel of Celiac tests and biopsy. At a minimum consider vitamin D, Liquid Iodine (unless you have dermatitis herpetiformis and iodine exasperates the rash), and Liquid Geritol. Push for vitamin D testing and a consult with a nutritionist experienced with Celiack Disease.  Most blood tests don't indicate nutritional deficiencies.  Your thyroid tests can be perfect, yet not indicate iodine deficiency for example.  Thiamine   test fine, but not pick up on beriberi.  Vegans are often B12 deficient because meat, fish, poultry, eggs, and dairy are the primary souces of B12. Here is what I take daily.  10,000 IU vitamin D3 750 mg g a b a [   ] 200 mg CoQ10 [   ] 100 mg DHEA [   ] 250 mg thiamine B1 [   ] 100 mg of B2 [   ] 500 mg B5 pantothenic acid [   ] 100 mg B6 [   ] 1000 micrograms B12 n [   ] 500 mg vitamin c [   ] 500 mg taurine [   ] 200 mg selenium   
    • NanceK
      My only proof

      By NanceK · Posted

      Hi…Just a note that if you have an allergy to sulfa it’s best not to take Benfotiamine. I bought a bottle and tried one without looking into it first and didn’t feel well.  I checked with my pharmacist and he said not to take it with a known sulfa allergy. I was really bummed because I thought it would help my energy level, but I was thankful I was given this info before taking more of it. 
    • Wheatwacked
      Feel like I’m starting over

      By Wheatwacked · Posted

      Hello @Scatterbrain, Are you getting enough vitamins and minerals.  Gluten free food is not fortified so you may be starting to run low on B vitamins and vitamin D.   By the way you should get your mom checked for celiac disease.  You got it from your mom or dad.  Some studies show that following a gluten-free diet can stabilize or improve symptoms of dementia.  I know that for the 63 years I was eating gluten I got dumber and dumber until I started GFD and vitamin replenishment and it began to reverse.  Thiamine can get used up in a week or two.  Symptoms can come and go with daily diet.  Symptoms of beriberi due to Thiamine deficiency.   Difficulty walking. Loss of feeling (sensation) in hands and feet. Loss of muscle function or paralysis of the lower legs. Mental confusion. Pain. Speech difficulties. Strange eye movements (nystagmus) Tingling. Any change in medications? Last March I had corotid artery surgery (90 % blockage), and I started taking Losartan for blood pressure, added to the Clonidine I was taking already.  I was not recovering well and many of my pre gluten free symptoms were back  I was getting worse.  At first I thought it was caused a reaction to the anesthesia from the surgery, but that should have improved after two weeks.  Doctor thought I was just being a wimp. After three months I talked to my doctor about a break from the Losartan to see if it was causing it. It had not made any difference in my bp.  Except for clonindine, all of the previous bp meds tried had not worked to lower bp and had crippling side effects. One, I could not stand up straight; one wobbly knees, another spayed feet.  Inguinal hernia from the Lisinopril cough.  Had I contiued on those, I was destined for a wheelchair or walker. She said the symptoms were not from Losartan so I continued taking it.  Two weeks later I did not have the strength in hips and thighs to get up from sitting on the floor (Help, I can't get up😨).  I stopped AMA (not recommended).  Without the Losartan, a) bp did not change, after the 72 hour withdrawal from Losartanon, on clonidine only and b) symptoms started going away.  Improvement started in 72 hours.  After six weeks they were gone and I am getting better.  
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