Advice please...

[Johna1]

Hi All,

Thank you for taking the time to read my post.

I have been diagnosed with coeliac disease via blood test and an endoscopy and biopsies (flattened to total villous atrophy).

I have been on a strict gluten free diet for just over two months.

I never had any real symptoms before being diagnosed and don't feel any difference really being on a gluten free diet.

But my stools are now always soft, no shape at all (like a cowpat) sorry for the description.

Is this normal and its does not seem to be to me and worried my celiac is not improving.

[cyclinglady]

Changes to anyone’s diet can have an impact.  What exactly are you consuming?  Often some newly diagnosed celiacs will increase the vegetable intake.  Others will find that have developed a few food intolerances to foods they may have eaten before or new foods.  For example, you could be reacting to a new grain or additive.  It sounds like you had a lot of damage.  Just going gluten free is not going to resolve that damage quickly.   It takes a while for antibodies to decrease.  

I can advise that your GP rerun your celiac antibodies at three months to see if they are declining.  Often it takes a year for them to come down as the gluten-free diet has a steep learning curve.  

http://www.cureceliacdisease.org/faq/how-often-should-follow-up-testing-occur/

Just curious.  If you were symptom free, what made your doctor order a celiac panel?  

[GFinDC]

Hi Johna,

I think its pretty usual to have GI symptoms after first starting the gluten-free diet.  One of the possible issues is bacterial overgrowth.  When your intestines begin to heal, the surface area of the villi increases and that provides more real estate for bacteria to colonize.  So things may get out of whack from that change.  It can take time for the bacterial balance to re-normalize.  One thing that may help is avoiding all sugar and carby foods for a few months.  Bacteria thrive on those sugars and carbs and an overgrowth can cause symptoms.

There is also the possibility of dairy reactions due to villi damage.  Another tricky thing is oats.  Oats are often cross-contaminated.  Also some of us have an immune reaction to oats like we do to wheat, rye and barley.

So removing dairy, oats, sugar and carby foods may help.

[Johna1]

7 hours ago, cyclinglady said:

Q1) What exactly are you consuming?

Q2) Just curious.  If you were symptom free, what made your doctor order a celiac panel?  

Many thanks for your reply and help really grateful and so glad to have found this forum.

Q1) I have cut out gluten of course :-), not eating any processed food, and not eating out. I have been eating a lot more vegetables like carrots, potatoes, sweet potatoes, swede,  parsnips, kale, broccoli, greens, a lot of fruit like, bananas, apples, berries, pears, melons, eating a lot of chicken, a little fish, making my own stock and adding to the food, also using a few gluten free products a cereal, bread, coconut milk, and coconut yogurt, i am only using pepper and ginger to spice things up, and drinking a gluten free coconut kefir every day.

I noticed after a week dairy did not agree with me so I have stopped dairy 2 months ago, not sure if the above is correct or a balanced diet?

I was low on VIT D, IRON (FERRATIN), FOLIC ACID, so i am not taking gluten free supplements for all of these and VIT C and A  bone supplement.

Q2) I went to my doctor a few times last year as after swallowing food I would get a dull pain between my shoulder blades and it would feel like not all of my food would go down and a small bit would stay at the top of my throat, as there is a history of oesophagus cancer in my family I thought the worse and kept going back to the doctors pushing the issue. The only other sign I would say I had was if i would have a baguette or a strong beer every now and then maybe once every few months I felt sick and would have to lie down for an hour. 

My doctor sent me to have an endoscopy done and they took biopsies from my oesophagus, stomach, and the second part of my duodenum the report said "blunting of the villous architecture up to total villous atrophy" "chronic inflammatory cells in the lamina propria and 44 lymphocytes per 100" still don't full understand what it all means and if it normal with celiac, after the endoscopy I was then sent to have my blood test done by the doctor who did the endoscopy (not by my doctor).

Edited March 7, 2019 by Johna1

[Johna1]

Hi GFinDC,

Really grateful for your reply and wisdom I spent hours researching yesterday and other days and your post helps so much more and i will be testing the water with it from today; thank you :-).

Are there any foods that might help settle things down over time?

And can there be hidden gluten in unflavoured nuts and frozen fruit chopped up fresh friut in packets I use for smoothies?

Thank you for all help received. 

Edited March 7, 2019 by Johna1

[GFinDC]

Hi Johna,

There is a thread on iron running right now that might interest you.

Yes, there can be gluten contamination in nuts.  Planters nuts are a pretty safe choice though.  They list any gluten ingredients on the package.

They could be gluten in frozen fruit I suppose.  I don't think its real common though.  There wouldn't generally be any gluten needed in a fruit packaging operation IMHO.  But is good to check the packagers website for specifics.  Many food packagers have information on their gluten content available now.

To be honest, your GI system may be upset because of the healing process.  It may take several months for things to improve.  Simple foods with little spice are a good way to go.  All home prepared food and no restaurants for 6 months is good.

There is also the possibility you are reacting to one or more of the foods in your revised diet.  Maybe eliminate one of them and see what happens?  It may be something you are consuming on a regular basis is not agreeing with your digestion.  Coconut?  strawberries?  other?  A good thing to consider is the common food allergens.  Link below.

https://allergytraining.food.gov.uk/english/rules-and-legislation/

[Johna1]

Hi GFinDC,

Thank you for all the info really grateful and I will have a good read now :-).

All the nuts and seeds I get never have any coatings on them but I will dig deeper into them and I might soak and rinse them in water and then roast them after if that might help.

[Fenrir]

It took my system quite a while to adjust to gluten-free. I ate a lot of whole wheat before and made the mistake initially of eating too many "gluten-free"  bread products that have little or no fiber.

So, I think if you give it time it will be more normal. 

[Johna1]

Hi Fenrir,

Thank you for your post and I will give it time, now looking deeper in things now :-).

Trying to get nuts and seeds in the uk that are labelled gluten-free seems impossible and left unsure if washing them before eating them is enough.

Seem like most companies in the uk don’t test on them or test at packaging.

[Ennis-TX]

Go a bit easier on the gluten free cereals and bread, most are just starch carb bombs, mix with high sugar fruits, and that probiotic your taking is going to lead to an overgrowth of bacteria. Try to keep your fruits down to 1 serving a day, or less. It might be natural sugar, but it is still sugar. Try more protein and fats, with added fibers.

For nuts, Nuts.com is pretty good on gluten-free, but they have peanut issues if you have reactions to those. I use Mygerbs for seeds. Try adding in a few tbsp of ground flax meal, chia meal, etc for more fiber. If you have iron issues try for using more red meats, cooked slow and long til they are super soft (beef stew crock pot). 

If you still want cereals, bread etc. Look at paleo based ones from nuts, they have more fiber, protein, and fats and much less carbs. IE Nuco Coconut Crunch and coconut wraps, Julian Bakery Breads and Granola Cereal, Mikey's Muffins Bread, pizza crust, english muffins. Califlour Foods Plant Based Pizza crust and crackers etc. 

Keep a food diary and try rotating your foods. With celiac, it is very common for us to get food sensitivities and allergies.
https://www.wikihow.com/Keep-a-Food-Diary

 

[Johna1]

Hi Ennis,

Thank you for your reply and time really greatful... wow I really have a lot to learn.

I really thought is was fonig good by having 5 or 6 pieces of food a day, when you knock out all these items I’m really left struggling on what to left to eat, everything seems to have a bad point in on way or another really left unsure on what to eat ?

[GFinDC]

1 hour ago, Johna1 said:

Hi Ennis,

Thank you for your reply and time really greatful... wow I really have a lot to learn.

I really thought is was fonig good by having 5 or 6 pieces of food a day, when you knock out all these items I’m really left struggling on what to left to eat, everything seems to have a bad point in on way or another really left unsure on what to eat ?

Hi Johna,

Great, now that we have talked you out of eating all that food you can send it to me! 

Just kidding!

Johna, rinsing the nuts and drying them should really help if they are contaminated.  But it would be better to check with the nut company and see what they say about gluten contamination.  Then buy nuts that are safe.

How about eating beef, pork, chicken, fish, eggs, sweet potatoes (yams), beans, peas, cauliflour, cabbage, grapes, chickpeas, amaranth, quinoa, broccoli, etc, etc, etc.  All these and more are naturally gluten-free foods.  Here in the USA there is a chain called Aldi's that sells gluten-free wraps/tortillas.  I don't know if they have the same wraps in the UK stores.  But they do carry a number of gluten-free foods there.

https://www.aldi.co.uk/special-diets/gluten?text=gluten free

Here is a thread on microwave buns you can make.

 

Edited March 8, 2019 by GFinDC

[Ennis-TX]

1 hour ago, Johna1 said:

Hi Ennis,

Thank you for your reply and time really greatful... wow I really have a lot to learn.

I really thought is was fonig good by having 5 or 6 pieces of food a day, when you knock out all these items I’m really left struggling on what to left to eat, everything seems to have a bad point in on way or another really left unsure on what to eat ?

Everyone is different, the diets that work for people depend on genetics (where you ancestors came from can determine what foods are easier for your ), gut flora, metabolism, etc. For me paleo based, with atkins/keto macros addressed my AI issues and allergies. I have a few recipes on my recipe blog where I play with ideas. I also have a post with various gluten free treats and where to get them. But for now try super simple stews/soups/bakes/nut meal porridge/sheet pan meals, fewer ingredients the better and try to avoid higher carb foods and ANYTHING spicy or very acidic til you heal some more. Think of your gut as carpet burned.
 

[Johna1]

Thank you so much for all the great help, small update I seem to now be only have very soft stools one in 5 or 6 looking more to normal but still all are a bit soft but an improvement.

I had a repeat  Tissue Transglutaminase (IgA) this week and it’s down from 9.9 to 1.1.

I was told on the NHS here in the UK a repeat endoscopy is not done...

Left wondering should I get a private endoscopy done and also get other panels of bloods done to see if all the blood levels are reduced (on the NHS they are only doing the Tissue Transglutaminase (IgA)  ) and at what stage in the process to do these if I should (I don’t mind paying for these if it’s a good idea? ).

Thank you to all...