Advice for a newbie at gluten free

[sjm1308]

So long story short I was diagnosed with iron deficiency anemia but after 2 months of galfer my GP said my body wasn't absorbing the iron and levels still too low so she wanted to test for coeliacs. I've had the blood test this week and waiting on the results which I know can take a few weeks. Thing is after reading up on the symptoms I'm 99% sure this is what I'm suffering from so I want to start cutting out gluten and diary (it's always made me feel ill) asap.

I know if the results come back positive they might want to do an endoscopy but I definitely won't be able to tolerate it so that's a no go completely (issues from a personal situation being forcibly held I won't go into it).

So I don't know where to start. I havnt a clue what I can and can't eat now. I've had a look on the coeliacs UK website but I'm not computing the information (brain fog ).

Any advice on how long it takes to feel better and any good cook book recommendations etc welcomed

 

[Indy51]

One of the main things is learning to read food ingredient labels and identifying gluten under it's many different names. It's absolutely gobsmacking how many processed foods contain wheat. I'd also warn against buying too many "gluten-free" products. Many of the ingredients can have surprising effects on blood glucose, though as a Type 1 you will have more freedom to bolus for the higher carb ingredients.

Sorry, can't give answers about how long it takes to feel better as I'm not coeliac.

Hopefully some of the Type 1 coeliacs like @Engineer88 and @robert72 will be along to advise.

 

[NoCrbs4Me]

Steak has no gluten.

 

[dancer]

I am coeliac but had no symptoms to speak of. I think it's a case of everyone is different. Some people feel better as soon as they go gluten free but others take a while to feel a difference.

You can actually do without a GF cook book unless you want to bake anything. I use my usual recipes, as most of them were GF anyway. I am a dreadful baker so figured that I'd be even worse trying GF recipes!

Steer clear of wheat, barley and rye. Some coeliacs can't take oats, so keep that in mind. Read ingredients carefully as you find gluten in the strangest places e.g. oven chips.
My coeliac blood test took a month for the result to come through, so you have a while to wait.

 

[DCUKMod]

I was tested for Coeliac a few months ago. The results were negative and inconclusive (I had a couple of tests done). That wasn't a surprise as I was already eating a LC diet for blood glucose control, and didn't increase my carbs prior to testing.

I hadn't had any meaningful symptoms, aside from being a bit, erm, ... gassy from time to time and a bit of constipation, which had been a long-standing situation for eons.

My Endo suggested I go GF anyway, as "people with AI conditions tend to do well on it". Sometimes I wonder if he was just giving me something to preoccupy myself with!!

After several weeks I realised that whilst I had never felt unwell or even under the weather, I did feel "better"; just a bit brighter really. Very odd.

Going GF begins a whole new raft of reading packaging. The bread, pasta, generally baked goods are easy enough to identify, but it is amazing where the pesky gluten gets. Soy sauce? Yep. Thickeners in sauces? Quite often, and so on it goes. The Coeliac Society website contains lots of useful stuff, including food lists etc.

Personally, I didn't make any changes to my diet until I had all my results were back, in case I needed further tests; thee results of which could be impacted by dietary changes.

Only you can decide which tests you would be able to accept taking on board, but I understand differing levels of sedation can be used to help make some tests more palatable, than without. Of course that may do nothing to ease your concerns and I absolutely respect your privacy in all that that entails. I don't mention it to upset you, but just to float it for your inward consideration..

@sjm1308 - There are a number of T1+Coeliac members on the site, and I'm sure others will drop by later.

I hope you begin to feel better soon, whichever route you end up taking.

 

[chalup]

Hi there, I am a type 2 with coeliac. Surprisingly when I went gluten free it was my arthritis that improved the most. It can run the gamut from no obvious symptoms to life threatening. Some things to look out for foodwise are sauces, gravies, salad dressings, most canned soups, and most ready prepared foods. Even toothpaste can have gluten in it. You will have to become a compulsive label reader if you decide to go gluten free.

 

[Engineer88]

Watch out for drinks including cheaper cokes with barley malt and vimpto. Really depends how sensitive you are.

FYI for the endoscopy you would be sedated heavily - I don't remember anything.

 

[jackors]

Google the website anti fodmap diet

 

[Kentoldlady1]

If you explain.your.worries about.the endoscopy I am sure that the staff would.be able.to.help. I have had one and dont remember anything about it at all.

I have been gf for a few months, I am hypothyroid as well as t2d and it is supposed to help. I have found it very tricky, tbh. I am amazed at how much gluten is in stuff that shouldn't need it at all. Toothpaste? Why toothpaste for.heavens sake?

Anyway, it gets easier with time. Although the words " new recipe" on something I have previously used can make my blood run cold.

 

[sunburst69]

I know your post was a couple of months ago. I am new to the site and was diagnosed with Celiac about a year before being diagnosed as a Type 2 (2003 & 2004). Generally, it takes about a year of being gluten free for the villi and lining of your intestines to fully grow back/repair for about 98-99 % of Celiacs. Of course you may feel/show improvement before that. I too was diagnosed as a result of being anemic and in a few months had good levels again. Even if you do digest gluten by mistake, it will not reverse the healing progress, but may make you sick temporarily - for me it lasts a few hours and then it's over.

 

[DCUKMod]

I know your post was a couple of months ago. I am new to the site and was diagnosed with Celiac about a year before being diagnosed as a Type 2 (2003 & 2004). Generally, it takes about a year of being gluten free for the villi and lining of your intestines to fully grow back/repair for about 98-99 % of Celiacs. Of course you may feel/show improvement before that. I too was diagnosed as a result of being anemic and in a few months had good levels again. Even if you do digest gluten by mistake, it will not reverse the healing progress, but may make you sick temporarily - for me it lasts a few hours and then it's over.

Wow! You're lucky. If I trip up and gluten myself I know all it for several days.

 

[sunburst69]

Wow! You're lucky. If I trip up and gluten myself I know all it for several days.

Sorry it's so long for you. It's always been the same for me. I hope there are no incidences for either of us.

 

[ZESTRIL]

So long story short I was diagnosed with iron deficiency anemia but after 2 months of galfer my GP said my body wasn't absorbing the iron and levels still too low so she wanted to test for coeliacs. I've had the blood test this week and waiting on the results which I know can take a few weeks. Thing is after reading up on the symptoms I'm 99% sure this is what I'm suffering from so I want to start cutting out gluten and diary (it's always made me feel ill) asap.

I know if the results come back positive they might want to do an endoscopy but I definitely won't be able to tolerate it so that's a no go completely (issues from a personal situation being forcibly held I won't go into it).

So I don't know where to start. I havnt a clue what I can and can't eat now. I've had a look on the coeliacs UK website but I'm not computing the information (brain fog ).

Any advice on how long it takes to feel better and any good cook book recommendations etc welcomed

 

[ZESTRIL]

Go for the endercopy if you ask them to put you out you won't feel a thing I promise you .I've had four two awake and two asleep so don't be afraid

 

[Robinredbreast]

So long story short I was diagnosed with iron deficiency anemia but after 2 months of galfer my GP said my body wasn't absorbing the iron and levels still too low so she wanted to test for coeliacs. I've had the blood test this week and waiting on the results which I know can take a few weeks. Thing is after reading up on the symptoms I'm 99% sure this is what I'm suffering from so I want to start cutting out gluten and diary (it's always made me feel ill) asap.

I know if the results come back positive they might want to do an endoscopy but I definitely won't be able to tolerate it so that's a no go completely (issues from a personal situation being forcibly held I won't go into it).

So I don't know where to start. I havnt a clue what I can and can't eat now. I've had a look on the coeliacs UK website but I'm not computing the information (brain fog ).

Any advice on how long it takes to feel better and any good cook book recommendations etc welcomed

Hi, I'm type 1 and Coeliac, it took a few weeks to get the results back, plus two endoscopies ( I was put under) but I felt so much better when officially diagnosed. No more vomiting, or severe upper abdominal pains, and other stomach problems, loss of weight too. It was difficult at first, but I soon got the hang of looking at all labels in supermarkets
( gluten is in so many products !) that was 6/7 years ago.
Good luck X

 

[Linda Kaufman]

Wow! Thank you! I knew someone who was allergic to gluten. She had to inject herself with medicine to eat the cake...

 

[iwilltouchyourcat]

Hi I’m coeliac and also diabetic. I don’t know if this helps but I was scared stiff about the endoscopy and they sedated me (my words to them were ‘pump me full of the highest dose you can please!’) and I didn’t remember a thing about it, came to afterwards feeling fine. Endoscopy is really the only way to get an official medical diagnosis, particularly if the bloods come back inconclusive or negative-which they do for a lot of people who have been avoiding gluten prior to the test, but if you’re happy to just go gf without that process that’s also fine? Only thing I’d say is that if you have a t2 diagnosis, some type 2 diabetics with an autoimmune disease are misdiagnosed type 1/Lada- something I found out for myself this year and am currently awaiting confirmation for via blood test, so something to bear in mind. Hope this helps