Jump to content
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Six months in - so many food intolerances, can hardly eat anything


strawberrymoon

Recommended Posts

strawberrymoon Apprentice
On 03/11/2016 at 7:55 PM, Jaemac said:

Hi Strawberry,

I've tried making bone broth and I didn't think I was very successful at it until just last week when I bought some commercially made bone broth (It's made locally here for our grocery stores and is authentic with no additives) and this stuff tasted just like what I had made. I thought I'd made a mistake as mine tasted like dishwater. Well that seems to be what it's supposed to taste like, not like chicken broth, lol. If you make it just know it won't add flavor to your potatoes it will add nutrients though. 

Also, I didn't know you were a vegetarian. As I assume you have trouble eating beans (as do most people, i mean we all know the jokes about beans) are you sure you're getting enough protein? What is your main protein source? If it's soy/tofu, you may want to explore that this may be one of the things making you ill. Soy can be really controversial. I looked up some of the symptoms of not eating enough protein, they are below.Oh, and if you're having trouble with the milk in butter you can make it into Gee which essentially involves melting it and skimming off the milk proteins to then it won't bother any lactose intolerance you may have. Just look up how to do it. Gee can also be purchased if money isn't a problem for you. Then you'd be able to add flavor to your potatoes. If you want to try a good chicken broth the one I use is called Better Than Bouillon and it's fantastic, it's pricy and does have a fair amount of salt but it salt isn't your problem then that may be a way to add flavor to your potatoes too, just make the water into a chicken broth and the potatoes will absorb it. The company also makes vegetable broth but I like the chicken better, lol. Hope the info below helps.

Eating too little protein can result in these symptoms as well:

  • A sluggish metabolism
  • Trouble losing weight
  • Trouble building muscle mass
  • Low Open Original Shared Link and fatigue
  • Poor concentration and trouble learning
  • Moodiness and mood swings
  • Muscle, Open Original Shared Link
  • Blood sugar changes that can lead to diabetes
  • Slow wound healing
  • Low immunity

Hi jaemac, I've heard a mixture of things about bone broth, a lot of what I've read seems to say it tastes nice.  I'll give it a go this week and see what happens lol

I haven't eaten meat for 31 years but there's been a couple of times when I've seriously thought about having some.  I'm starting to feel like I might not have any choice soon.  I can't have soy/tofu, to be honest I don't think I'm getting much protein, if any, and I do have some of the symptoms you listed apart from trouble losing weight!

I didn't realise butter might be okay.  I had a big problem with cheese so cut all dairy out a few months ago.  I'll try some butter and see how I get on with it. 


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



strawberrymoon Apprentice
8 minutes ago, Ennis_TX said:

Note Nutritional yeast is not the same as a active yeast/bread yeast....I can not eat anything with yeast in it. Nutritional yeast is different and safe for most people who can not eat yeast used in breads etc. It is inactive, and for me does not cause any of the issues I get with normal yeast. Do some research into it might be worth a try.

 

I didn't realise that, thanks.  I'll look into it.

strawberrymoon Apprentice
On 05/11/2016 at 1:31 PM, Rowan13 said:

Hi,

Just wondering have you looked into oxalates and oxalate levels of foods that bother you? I've discovered that the high and very high levels of oxalates in some foods seems to make me sick. I've learned that if I stay under a certain level of oxalates per day it is better for me. Open Original Shared Link

This is the main site I learned a lot about it and also the associated Yahoo group/forum. I've already realized I'm reacting to Salicylates, histamines and a lot of other stuff. Like you I get down to only a handful of foods but I've managed a few times to get somewhat better by checking to make sure I'm not ingesting high levels of of any of these components. However, I didn't understand gluten & dairy was making me sick and kept regressing. I at least have more awareness that for example spinach has massive amounts of oxalate & steer clear. (Though I loved spinach as a child) Oxalates build up in the system and if you consume more in a day than you can break down it can make you feel very ill, poisoned almost and cause a lot of side effects.

What seems to help me a bit is magnesium salt baths, but not too much! I even react to too much of that. Also dead sea salt mixed with the magnesium. My fav brand is Ancient Minerals flakes which I order directly from their site. Also drinking plenty of water and I like Smart water, distilled water sometimes and less often spring because that can make me feel sick too. Getting out in the fresh air can help but when I'm really sick even that can make me feel worse. But I feel my lessening of exercise and being in the outdoors (because of being sick & other stresses) has contributed to my getting sicker. (A catch 22)

Using google calendar or something like that is helpful for me to keep track of when I've been sick, what i ate, etc.  Even if I can just write a few sentences later I can look back and possibly see a pattern. I know now I can NOT drink coffee anymore. At least not for now. Staying up late on the computer strains me too but I admit I still do it because it also cheers me up. But I know if I overdo that it affects me in the next few days. Bone broth made me feel awful but I don't know why. It seems any time I boil or simmer something for a long time it doesn't make me feel well.  And finally, you probably know it already but the Open Original Shared Link website is quite good for supplements, special food products & other pharmacy type products. I also like this companies products, Open Original Shared Link especially the Sensitive probiotics. (But I've only just gone gluten free so I'm not at all sure that that product is safe.)  Sorry for this mish mash.  Best wishes.

 

Hi Rowan, I did read something about oxalates a while back and meant to look into it more.  It sounds like this could be part of my problem.  I'll look into it again. 

Like you I can't drink coffee anymore, but feel better for cutting it out. I also tend to stay up late most nights which probably isn't doing me much good.  I stopped exercising a few months ago so I should probably start that again.  I've noticed anything I put in the blender seems to make me feel ill, it must be something to do with the way food reacts depending on how it's cooked I think, I can't think of any other reason.

Thanks for this and the links I'll have a look at them.  I hope things improve for you soon.

Archived

This topic is now archived and is closed to further replies.

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - knitty kitty replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    2. - Wheatwacked replied to Jmartes71's topic in Coping with Celiac Disease
      8

      Related issues

    3. - NanceK replied to Jmartes71's topic in Related Issues & Disorders
      8

      My only proof

    4. - Wheatwacked replied to Scatterbrain's topic in Sports and Fitness
      4

      Feel like I’m starting over

    5. - Scott Adams replied to Kirita's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      3

      Recovery from gluten challenge


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      132,289
    • Most Online (within 30 mins)
      7,748

    SarahZ
    Newest Member
    SarahZ
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • knitty kitty
      @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
      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
      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
      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.  
    • Scott Adams
      Hopefully the food she eats away from home, especially at school, is 100% gluten-free. If you haven't checked in with the school directly about this, it might be worth a planned visit with their staff to make sure her food is safe.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.