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Its A Silly Question

Poppets

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Poppets Rookie
Poppets
Posted

Hi everyone,

I am due to get my test results tomorrow and i guess im going to try to go gluten free as recommended on here regardless of whether the test is positive or not. part of me is expecting the result to be negative so im preparing myself for the ongoing battle to find out whats wrong with me!

I just have one question - when you completely cut out gluten what on earth do you eat? Ive been looking at packaging a little bit and gluten seems to be in everything! I even found it in pate! I usually eat a really wide and varied diet and i love food and eating out. I am writing a recipe book to be published and i cook meals right from scratch, i make nothing from packets and i eat very little processed foods. I know gluten is in bread, pasta and breakfast cereal and now pate! but thats all i know, is it in everything containing flour? some of the packaging in the UK states what allergies shouldnt eat the food but not all the packaging does so what then? Ive been reading here about people cutting out gluten and keep making mistakes and having to go back to day zero again, is my diet going to be purely restricted to meat and vegetables? and what about eating out? I know pizza hut is a definate no go but what about the risk of cross contamination with a salad for example - how would you know that the chef didnt cut the tomatoes with same knife he used to cut bread? Can you ever be truly 100% gluten free?

Sorry for all the questions, its just a very confusing time!

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buffettbride Enthusiast
buffettbride
Posted

The easiest way to start is with whole foods. Plain meats, veggies, and rice seem to give most people some success. You can spice it up a bit with some salt and pepper so it's not so bland. However, if gluten really is your problem, eating these plain foods will really give your tummy time to heal and feel good. Then you can introduce more foods.

Spend some time here and you'll really learn a LOT about successful and tasty gluten-free living. I don't know what I would do about this place.

As for living 100% gluten-free, it's probably not *completely* possible, but for the most part it is something you can control by making good food choices. There is always risk associated with eating out and eating something accidentally (which will happen at first). What is most important, as I see it though, is your dedication to 100% compliance with the diet and taking the slips and mistakes as they come. They will become fewer and far between though.

Good luck with your diagnosis and your gluten-free diet adventure!

missy'smom Collaborator
missy'smom
Posted

If you're already familiar with a wide variety of foods and cooking from scratch then you have some helpful tools to cope with this change.

Yes, everything with "regular" flour and " whole wheat" flour contains gluten. There are a variety of glute-free flours and starches that can be substituted for "flour" in gravies, white sauces and many other sauces and bases without any recognizable change in flavor or consistancy.

There are also a variety of gluten-free breadcrumbs, both store bought and homemade that can be substituted in meatloaves, meatballs etc. again without any difference. You can still make breaded items as well, with some slight difference in taste and texture.

Many shapes and kinds of gluten-free pastas are available.

You will probably be able to adapt many of your old recipies and many of them may already be gluten-free.

There are some very good baking mixes for pancakes, cakes etc. that you can start with until you're ready to learn how to bake gluten-free.

I'm not sure which country you live in but if the packaging doesn't provide suficient info for you, here in the U.S. they list phone #'s on the package and we can call the company or e-mail them via thier website.

It is possible to be 100% gluten-free. I do occasionally get cross-contamination or problems with a product but after being at this a year, it is fairly rare.

Take one day at a time.

Poppets Rookie
Poppets
Posted
  • Author

Thank you both for your answers, my doctor said that if the test result is negative he will forget about Coeliacs and start on something else, but i dont think its as easy as that though with all the false positives ive heard about, but to give him credit he did say that he wouldnt stop until he found out what is wrong with me - havent i got a great doctor!

ravenwoodglass Mentor
ravenwoodglass
Posted
Thank you both for your answers, my doctor said that if the test result is negative he will forget about Coeliacs and start on something else, but i dont think its as easy as that though with all the false positives ive heard about, but to give him credit he did say that he wouldnt stop until he found out what is wrong with me - havent i got a great doctor!

Poppet where are you hearing about false positives? I have never heard of that, false negatives abound but false positives just do not exist. Before you go through a bout of expensive testing if the test comes out negative try the diet for a bit. You have nothing to lose and everything to gain. If you are still having problems after a couple of months gluten free then go for more testing and meds.

Poppets Rookie
Poppets
Posted
  • Author

Sorry i meant false negative! In the UK we dont have to pay for our medical care which is great!

xx

ravenwoodglass Mentor
ravenwoodglass
Posted
Sorry i meant false negative! In the UK we dont have to pay for our medical care which is great!

xx

I wondered if that was it. :)

Just a note about testing, you may not pay for it cash wise but if you are celiac and they have not acknowledged that many of the preperations that they use in testing, like barium and such are not safe and you risk making yourself very sick. Do give the diet a good try, even if you decide to let him look for other stuff. Being gluten free will not effect the outcome of any testing other than testing specifically for celiac so it will not hurt to try the diet while they are testing for a myriad of other things. You may find the diet takes care of the problems before the testing date arrives.

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blueeyedmanda Community Regular
blueeyedmanda
Posted
Poppet where are you hearing about false positives? I have never heard of that, false negatives abound but false positives just do not exist. Before you go through a bout of expensive testing if the test comes out negative try the diet for a bit. You have nothing to lose and everything to gain. If you are still having problems after a couple of months gluten free then go for more testing and meds.

Actually, false positives do exist on lab reports. I had a strong positive. But the ranges were negative, false positive, weak positive, and then positive. My score was off the charts and so I was in the positive result no doubt.

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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
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      @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
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      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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