Still Having Issues, Dont know Why

[bluegrass2024]

I've been diagnosed with celiac since June 2023. Positive blood test and endoscopy. Over the past year I've been working on being gluten free, but it seems lately that the better I do the symptoms just wont go away. I was 20 when diagnosed and like many college students I ate out frequently. For the first 5-6 months post diagnosis I struggled with trying to find safe restaurants to eat out at, before eventually giving up on eating out almost entirely about 5-6 months ago. Still, I've been unable to go more than a month without symptoms. As time goes on I restrict my diet further and further trying to eliminate things in a desperate attempt to be able to feel good consistently, but to no avail. Since the second week of July I have been insanely careful. However, I am still having symptoms: diarrhea, gas, LUQ/LLQ pain, H/A usually after diarrhea, brain fog and constipation.

What I've been eating for the past 3 weeks: canyon house bakery country white bread (GFCO), Kroger simple truth organic black forest ham (prepackaged and labeled gluten-free), Boars Head prepackaged cheddar cheese (labeled gluten-free), Chomp's meat sticks (GFCO), Udi's burger buns (GFCO), Kroger ground beef burger patties, Heinz Ketchup (labeled gluten-free), Kroger yellow mustard (labeled gluten-free), Bob Evans mashed potatos (labeled gluten-free), Kraft gluten-free mac n cheese cups (NSF gluten-free), Kettle Brand sea salt and vinegar potato chips (GFCO), Fody pasta sauce (GFCO), Barillo gluten-free pasta (GFCO), Natures Bakery gluten-free blueberry fig bar (GFCO), Mission gluten-free tortilla (GFCO), Old el Paso taco seasoning (labeled gluten-free), Kroger brand taco sauce (labeled gluten-free), Kroger ground beef, Milo's sweet tea, blue/orange/yellow powerade, yellow gatorade, Ale8 (local soda like ginger ale), Folgers coffee, Coffee Mate french vanilla creamer, Buc'ees sweet tea, eggs, Johnsonville sausage patties (labeled gluten-free). I think thats everything, I've been getting the same coupe of things at the grocery each week.

 

I used to drink Red Bull, cut that out cause I thought it might be the issue, but the issue persists. Used to get gluten free dinner kits from walmart, they were certified gluten-free, one was stroganoff and one was cheesy mac, i cut them out bc i thought maybe the dairy in them was causing me problems. I used to eat certified gluten free pizzas but i thought maybe the dairy in them was causing problems so i cut them out about a month ago. But the problems persist. I switched from a GFCO dairy creamer to the coffee mate creamer bc it was listed as gluten-free and dairy free. Issues still occurring. I used to be able to get strict about my diet and feel great for several weeks to a month, then I would get bold and miss things and end up eating out or trying something new and get glutened. Now, for the past 2-3 months I don't feel good even with being super strict. I'm eating the same things that I used to eat when I was being super strict and feeling good. I'm getting really frustrated.

 

the last two weeks I have had major diarrhea twice, both last Thursday and today. I have noticed over the past 2-3 months that the pattern of diarrhea does seem to be about every 7 days or so. Last Thursday I drank a bottled Dunkin iced Coffee drink from the little snack store on campus. About two hours later I got diarrhea. I attributed that to being dairy. My celiac symptoms usually pop up 24-48 hours after gluten ingestion. Yesterday and and the day before I had coffee, because I cut out my redbull, and then yesterday around 10pm I was having diarrhea again. My post gluten diarrhea is choclate milk, followed by abdominal cramping and headaches and then horrible foul gas a few days after diarrhea, so about 4 days after the gluten exposure. I haven't been having chocolate milk diarrhea every week for the past 2-3 months, but i would have semi formed stools and that didn't used to happen when I was careful and consistent gas. But now the last two weeks I have had the watery diarrhea. Last week I didn't get the cramping or the severe foul gas, so I attributed the diarrhea to a possible lactose intolerance thinking maybe gluten hasn't been causing the problems lately, but after the diarrhea last night I do have the abdominal cramping, I woke up with a headache, and had brain fog in class this morning. 

 

Sorry for the long ranting post. If anyone has any insight it would be appreciated. I really needed to vent about this.

[trents]

It sounds like you are getting some dairy still and many celiacs are intolerant of dairy, either from the lactose or the protein, casein, in dairy which closely resembles gluten. Are you still consuming oats? Oats is another common cross reactor. Oat protein, avenin, is similar to gluten. Also, have you looked into MCAS/histamine intolerance?

Edited September 6 by trents

[bluegrass2024]

The only Oats in my diet are in the Canyon House bread and the Natures Bakery fig bars, both of which are GFCO certified

[trents]

It's not the gluten in the oats that is the issue, it's the oat protein itself, which is not considered to be gluten so it's not violating the gluten free standard.

[bluegrass2024]

I've been eating the bars and the bread since I was diagnosed, even during my good patches.

 

 

[trents]

It is common for celiacs to develop additional food intolerances over time. Keep in mind that celiac disease is at heart a dysfunction of the immune system and it which tends to become more dysfunctional with time. I'm guessing there is something or somethings in your diet that are not gluten that you have become intolerant of since developing gluten intolerance. Or you have developed mast cell activation syndrome (MCAS) which is common in the celiac population. By the way, about 10% of celiacs experience a reaction to oat protein in the same way they do to gluten. But it could be almost anything. Prepackage/prepared gluten free food items have a lot of weird stuff in them that cause many problems, things like xanthan gum and sugar alcohols (xylatol, malatol, etc.)

Edited September 6 by trents

[cristiana]

Hi @bluegrass2024

I am so sorry you are having continuing symptoms.  Whilst not in the USA, so I cannot comment on the products you list, I wanted you to see this content I posted the other day to someone else on the forum in case it helped.  Forgive the re-post but I've not got to go to work shortly.

Cristiana

***

Eating out

This really is an important factor to consider.  Although most caterers have a better grasp of catering for coeliacs today, mistakes slip in - only this summer I was given a plate of gluten free food, a Ploughmans Lunch, BUT the baguette was normal bread!

Now, some other things that might be going on:

Temporary Lactose Intolerance

I had issues with diarrhea some time into my early recovery.  The loose bowels and frequent visits to the loo only really improved when I came off not only gluten but dairy products, specifically milk, soft cheese and yoghurt.   Are you still consuming dairy, because if so, it could be the cause.   Coeliacs can become temporarily lactose intolerant  because the villi tips, which are damaged in coeliac disease, means we cannot digest lactose properly.  Once they heal, you can reintroduce dairy gently.  Maybe give it a few weeks, then try again.  (Incidentally, during this period I was still able to tolerate small amounts of cheddar, you might be able to as well, as it is very low in lactose).

Oats

I am looking at the timing of your posts and wondering if you are in the UK?  If so, did you see a nutritionist or gastroenterologist as part of your NHS aftercare?  Mine advised coming off oats for six months to a year after diagnosis, before reintroducing them to my diet.  The reason is some coeliacs cannot tolerate oats, even the pure oats which are certified free from gluten contamination (we shouldn't be eating anything other than those, so, sadly, goodbye to Quaker Oats for us!)  Some coeliacs, either newly diagnosed or some in the long term, continue to react to oats, even the pure ones, as if they were wheat or barley.

Supplements and Medication

Have a look at the smallprint of the ingredients of any medication you use.  I made a huge mistake sometime into my gluten free diet by consuming an iron supplement, Floradix, instead of Floravital.  The former has gluten in it, but the packaging is almost identical.   (TIP:  A pharmacist told me a while back that if UK medication has a PL number on it (Product License) it will be gluten free.)

Lip Balm etc

Anything that goes on your lips - ensure it is gluten free.

***

I would encourage you to keep a food and symptoms diary during this time and see if any patterns are emerging.  You may have developed intolerances which will fade in the long run (I couldn't cope with soya products during the healing process, for example).  Remember to make sure any shared utensils you use are scrupulously clean and don't share a toaster or butter with any non-coeliacs.   Also, if you are in the UK, it is worth joining Coeliac UK even if just for a while, as they issue a fabulous Food and Drink guide (also a digital version).   It will be money very well spent.

If you have already tried the above, I remember being told when I was diagnosed that GPs are interested in referring people to gastroenterologists who have had 'new' symptoms that have hung around for more than six weeks. 

If that is the case with you, it might be worth talking to your GP.   I had to see my gastroenterologist again a few months after my diagnosis because of a lot of pain with bloating, and he gave a couple more tests just to ensure nothing else was happening (it wasn't, but the peace of mind was good to have!)

One other thing to consider:  some coeliacs can also have Irritable Bowel Syndrome (IBS).   This was responsible for continuing symptoms, and I was diagnosed with it a few years ago. 

 

[GardeningForHealth]

15 hours ago, bluegrass2024 said:

What I've been eating for the past 3 weeks: canyon house bakery country white bread (GFCO), Kroger simple truth organic black forest ham (prepackaged and labeled gluten-free), Boars Head prepackaged cheddar cheese (labeled gluten-free), Chomp's meat sticks (GFCO), Udi's burger buns (GFCO), Kroger ground beef burger patties, Heinz Ketchup (labeled gluten-free), Kroger yellow mustard (labeled gluten-free), Bob Evans mashed potatos (labeled gluten-free), Kraft gluten-free mac n cheese cups (NSF gluten-free), Kettle Brand sea salt and vinegar potato chips (GFCO), Fody pasta sauce (GFCO), Barillo gluten-free pasta (GFCO), Natures Bakery gluten-free blueberry fig bar (GFCO), Mission gluten-free tortilla (GFCO), Old el Paso taco seasoning (labeled gluten-free), Kroger brand taco sauce (labeled gluten-free), Kroger ground beef, Milo's sweet tea, blue/orange/yellow powerade, yellow gatorade, Ale8 (local soda like ginger ale), Folgers coffee, Coffee Mate french vanilla creamer, Buc'ees sweet tea, eggs, Johnsonville sausage patties (labeled gluten-free). I think thats everything, I've been getting the same coupe of things at the grocery each week.

I used to drink Red Bull, cut that out cause I thought it might be the issue, but the issue persists. Used to get gluten free dinner kits from walmart, they were certified gluten-free, one was stroganoff and one was cheesy mac, i cut them out bc i thought maybe the dairy in them was causing me problems. I used to eat certified gluten free pizzas but i thought maybe the dairy in them was causing problems so i cut them out about a month ago. But the problems persist. I switched from a GFCO dairy creamer to the coffee mate creamer bc it was listed as gluten-free and dairy free. Issues still occurring. I used to be able to get strict about my diet and feel great for several weeks to a month, then I would get bold and miss things and end up eating out or trying something new and get glutened. Now, for the past 2-3 months I don't feel good even with being super strict. I'm eating the same things that I used to eat when I was being super strict and feeling good. I'm getting really frustrated.

Canyon Bakehouse stuff: Yeah I used to eat that a lot too--was a staple in my diet. They contain non-gluten grains that you may be cross-reacting to. Teff, sorghum, etc. 

Boar's Head: They recently had a recall for lysteria...

Udi's burger buns: see Canyon Bakehouse

Gluten-free spaghetti noodles: see Canyon Bakehouse 

Mashed potatoes: its very easy to make them yourself, just chop up some potatoes into 1 inch cubes, boil till soft, mash, add butter or ghee, some salt or and bone broth or a bullion cube or two.

I myself have been keeping a food journal and have reacted to similar foods as you: I reacted to tea, gluten-free breads, gluten-free noodles, and more. 

I just stopped eggs yesterday and am going full AIP, maybe you should join me ha! Didn't want to do AIP but had no choice.

 

[Lotte18]

So sorry that you're going through this during your college years.  The first year or two of this is the hardest.  The Drs. don't seem to know that there's a recovery phase that requires more than going gluten free.  Coffee and lactose should be avoided.  You need to calm the system down.  Start your day with ginger tea.  Basic Culture grain free bread instead of the Canyon Bread, at least until your symptoms ease up.  Kettle Fire beef bone broth is also very soothing and seems to help heal the intestinal lining.  Hope you feel better soon!

[Wheatwacked]

Looks like you are doing everything right as far as food choices.

Throughout the day I use Red Bull for my energy calories. Red Bull is sugar water and the vitamins needed to process into energy plus Taurine an antioxidant.

"Your body uses taurine for several different functions." Your body makes its own taurine, but you can also get it through protein-rich foods...Both sources of taurine are important to maintain the levels your body needs, and one can compensate for the other if there’s a deficiency."  WebMD: Taurine: What Is It?  We use glucose to make ATP. 

In the evening I usually have CB Heritage Style whole grain with Boars Head Deluxe Roast beef, or gluten-free cooked ham and swiss with mayo or mustart and greenleaf lettuce, potato chips, fermented olives.  Ronzoni gluten-free Thin spaghetti with diced tomato, basil, garlic, oregano and ground beef cooked and drained, mushrooms.

When you choose gluten free you do not get the vitamin and mineral fortifications in gluten foods.  They are added to gluten foods because out western diet is deficient.

Food supplements that may help:

Thiamine: Celiac disease can make it difficult for people to get enough thiamine, or vitamin B1, in their diets.  Deficiency can cause gastrointestinal beriberi.  Replacement gluten-free substitutes tend to be low in vitamin B1.

Choline: Eggs, beef, liver.  90% of westerners do not eat the minimum amount of choline. 3 eggs, or 12 ounces of steak. If your poop is light-colored, yellow, clay-colored, or very light brown, this may be a sign of inflammation in your gallbladder, liver, or pancreas.  Choline is the major part of bile salts.  Low bile salts thicken the bile, causing poor digestion of fats.

Are you getting enough vitamin D?

Low iodine intake.  Before 1970 bread and milk was the main source of iodine. They stopped using iodine as a dough conditioner in 1980.

"Data collected in the United States by National Health and Nutrition Examination Survey I (NHANES I) for the years 1971-1974 showed that the median urinary iodine level was 320 mcg/L, reflecting adequate dietary iodine intake.  However, by the time of NHANES III (1988-1994), the median urinary iodine value had fallen to 145 mcg/L." Iodine Deficiency 

 

   

[DanMc]

I don't mean to scold, but none of what you're eating there is food, every single thing is a food product, which means raw food adulterated with various additives. It's at that adulteration point where various nasties that the body dislikes start to creep in. Bulking agents, colours, sugar, various gums and additives. And of course, trace amounts of gluten. If possible - and i imagine this won't be easy or cheap, but it's worthwhile - try and get more whole foods into your diet, and cook them from scratch. That means meat, fish, tolerated grains, fruit and veg. At the moment you are basically eating trash - sorry!

[cristiana]

I recall some statistic I heard some years back, that in powdered chocolate milk there were something like 25 different stages in the production process taking into account all the ingredients.  I can see that if this is true, the more stages there are the more chances there are for cross-contamination.  Eating whole foods helps minimise or totally eliminate this risk.  It took me several years for my tTG levels to return to normal, and looking back maybe processed food could have been part of the problem.  Definitely worth trying cooking from scratch.

Edited September 23 by cristiana