Sick as a dog 6 weeks post-diagnosis

[Blue Roan]

Hello, I just wanted to see if anyone else had similar symptoms during recovery.

After dealing with severe abdominal pain for a couple of months, an endoscopy/biopsy confirmed I had Celiac. For the first few weeks going gluten free, I was generally feeling better. While I still had symptoms, they weren’t usually severe and my appetite was returning. I was finally able to sleep through the night and wasn’t bedridden the majority of the time. Fast forward to yesterday (6 weeks post-diagnosis) and I’ve been sick as a dog. 
 

I’m almost back to where I was pre-diagnosis: waves of nausea, heartburn, joint pain (especially in hips), restlessness, fatigue, loss of appetite, brain fog, and water just goes through me so I’m urinating frequently. I’m confused because I’ve been so careful about not eating out, cross contamination, and sticking to the gluten-free diet. I feel miserable! I haven’t been able to get out of bed most of the day. Anyone else get these debilitating episodes?? 
 

The only thing I can think of is eating Aussie Bites within the past couple of days. They’re labeled as gluten-free but they have oats and millet, so maybe I’m sensitive to that. And I just read that they were likely stored in a facility containing wheat 🙄. I also was having lactose almost daily until I cut it out a couple days ago after reading that it can irritate the intestines. 
 

So I’m wondering first how others have been able to recover from severe flare ups. But also is it normal to just have crazy, seemingly random flare ups throughout your recovery like this? I’m feeling really stressed and demotivated because this illness takes up so much of my time and mental space. I’m a graduate student and this has really interfered with my productivity. 
 

If it helps, my TTG was high at diagnosis (above 250) and there was a lot of villi damage. I was also tested for diabetes and got the full panel (CBC, kidney, etc.) at time of diagnosis and all came back negative. Glucose was fine. Had abdominal CT scan, which was also normal, and I’m waiting to hear back on follow up TTG + vitamin lab work results. 

[Blue Roan]

Also, I forgot to ask. What are some methods/celiac friendly meds you’ve used to deal with nausea and heartburn? I’m seeing my doctor soon but wanted to also see what others have been doing to cope. 
 

Do any of you struggle with nighttime nausea as well? Mine starts between 1-3 AM and stays until late morning. I’m lucky if I get even 2 hours of sleep, so I’ve had to rely on daytime napping. This has been going on for about 3 days now. 

[Scott Adams]

Hi @Blue Roan, around 10% of people with celiac disease cannot tolerate oats, so you may be in that group. Try eliminating them for a few weeks to see how it goes. 

Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months.

Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal.

This article may be helpful:

 

 

[knitty kitty]

@Blue Roan,

How are you doing?

I checked on the ingredients of those Aussie Bites.

Organic Rolled Oats, Organic Oat Flour, Organic Unsalted Butter, Organic Expeller Pressed Canola Oil, Organic Dried Apricots, Organic Sugar, Organic Cane and Invert Sugar, Organic Raisins, Organic Flax Seeds, Organic Honey, Organic Shredded Coconut, Organic Quinoa, Organic Chia Seeds, Sea Salt, Baking Soda, Organic Vanilla. Allergy Information: Contains Milk and Coconut. Produced on shared equipment that may contain Wheat, Soy, Eggs, Milk, Coconut, Peanuts and Tree Nuts.

Flax seeds and China seeds are difficult to digest.  They are high in plant lectins and insoluble fiber. Not the best for high Marsh score damage. 

I found it helpful in recovery to avoid all grains (oats included) and seeds for several months.  This allows time for the intestinal lining to heal.  Avoiding dairy altogether will help as well.  Avoid Nightshades (tomatoes, potatoes, eggplant and peppers) as well.  These contain glycoalkaloids which promote leaky gut syndrome.  

Basically, avoid all processed foods.  Fruit, veggies and meat are gluten free.  

Glad you're being checked for vitamin and mineral deficiencies.  Correcting Vitamin D deficiency can help lower inflammation and regulates the immune system.  A B Complex will help ensure you are getting sufficient essential vitamins needed to heal the intestines.  Minerals like calcium, potassium, and magnesium can help lower inflammation, too. 

Hope this helps.  Keep us posted on your results.

[Beverage]

I reacted to Aussie Bites. I have also reacted to Bob's gluten free oats and granola. The only oats I can tolerate are Purity Protocol oats. But for now, stay away from all oats until you feel better, and for awhile after. Then try Purity Protocol oats to see if you can eat those or not. 

https://www.glutenfreewatchdog.org/news/oats-produced-under-a-gluten-free-purity-protocol-listing-of-suppliers-and-manufacturers/

 

 

[saindonmona]

On 3/20/2024 at 11:01 AM, Blue Roan said:

Also, I forgot to ask. What are some methods/celiac friendly meds you’ve used to deal with nausea and heartburn? I’m seeing my doctor soon but wanted to also see what others have been doing to cope. 
 

Do any of you struggle with nighttime nausea as well? Mine starts between 1-3 AM and stays until late morning. I’m lucky if I get even 2 hours of sleep, so I’ve had to rely on daytime napping. This has been going on for about 3 days now. 

Yes that was me last night  stomach ache still have it tonight wow thats a long time 

[Scott Adams]

Hi @saindonmona, do you have celiac disease, and did you get gluten somehow?

[Blue Roan]

Thank you so much everyone for all of your advice and support! @knitty kitty, I appreciate the level of detail you provided. Definitely something to keep in mind. It has been so rough and I kept wondering if I'm an outlier in terms of symptom severity. I guess not! @saindonmona, I hope you are feeling better now. 

My symptoms calmed down later that night after making the post. I think it might have been both the oats and the lactose I was consuming. I also realized that the lactose intolerance was causing frequent urination because that symptom stopped a few days after going lactose free. Just two nights ago, I had another flare up with identical symptoms (thankfully I am slowly recovering from it now) after consuming Nutella (contains milk) and eating a mozzarella stick absentmindedly. I did not know Nutella had milk until today right after eating some more with gluten-free bread...I got a mini-version of the symptoms a couple hours later (along with a headache). So while I am frustrated and tired, I'm relieved to have found out what I need to avoid. 

Thankfully, I learned that drinking a lot of water, green juicing and consuming bone broth helped to significantly reduce my downtime this time around. Giving my gut a break from solid food for a day seemed beneficial. 

In terms of lab results, my TTG IGA went down from over 250 to almost in the 80s these past 2 months. Yippee! All nutrient levels were normal except for copper, which is slightly elevated. Going to see my GI doctor in a couple of weeks to discuss it. I heard that copper goes up when the body is dealing with inflammation and I had labs drawn during the first flare-up, so maybe that's it. 

[knitty kitty]

@Blue Roan,

Get your zinc level checked, too.  Copper can accumulate if there's a deficiency in zinc.  Copper and zinc balance each other.  

Great that your tTg IgA levels are reducing!  Good job!

 

[Blue Roan]

@knitty kitty That’s good to know! My zinc levels were normal, but I’ve been making more of an effort recently to eat more leafy greens so maybe the zinc in them will help. 
 

Thank you! 

[normagain]

Blue Roan, My hips started to hurt a couple yrs ago and got progressively worse until I could barely walk. One dr gave me a steroid injection to no avail and another suggested pain killers that gave minimum relief for the rest of my life. So I searched the web for possible solution. I bot a red light therapy panel for little over a $100 with the option of just red light or infrared or both. I used it morning and night for a few weeks and each day felt better. So now I get a flare up every so often esp around inclement weather. At first I used the red light but now when the pain comes it is tolerable then peaks and goes away without the therapy, hope I don't jinx myself. I have no idea if this pain was from arthritis, celiac or what but I thought I would mention it so that you could research the topic if you want.

[knitty kitty]

@normagain,

I've used Cobalamine B12, Thiamine B1, and Pyridoxine B6 to help with my back pain.  These vitamins together are found to act as an analgesic.  

Since nutritional deficiencies are common in Celiac Disease, supplementing with vitamins and minerals is a good idea.

Hope this helps!

Role of B vitamins, thiamine, pyridoxine, and cyanocobalamin in back pain and other musculoskeletal conditions: a narrative review

https://pubmed.ncbi.nlm.nih.gov/33865694/

[Blue Roan]

On 4/9/2024 at 1:45 PM, normagain said:

Blue Roan, My hips started to hurt a couple yrs ago and got progressively worse until I could barely walk. One dr gave me a steroid injection to no avail and another suggested pain killers that gave minimum relief for the rest of my life. So I searched the web for possible solution. I bot a red light therapy panel for little over a $100 with the option of just red light or infrared or both. I used it morning and night for a few weeks and each day felt better. So now I get a flare up every so often esp around inclement weather. At first I used the red light but now when the pain comes it is tolerable then peaks and goes away without the therapy, hope I don't jinx myself. I have no idea if this pain was from arthritis, celiac or what but I thought I would mention it so that you could research the topic if you want.

So sorry for the delay. Thank you for the suggestions! 
 

After a recent DEXA scan, my bone density is very low for my age and I was referred to an endocrinologist. I just saw her today and she said I have osteomalacia from how long I’ve had undiagnosed celiac. She said I can get back to normal bone density with vitamin d/calcium supplements, a calcium rich diet and weight bearing exercise. It may take a good year or two to see significant progress. 
 

Re: the high copper levels - After a retest in April, the copper is now normal. The inflammation had also gone away at the time. Homemade bone broth, juicing, and going paleo for a week to take a break from grains seemed to work wonders. Feeling amazing now with a lot of energy. 

[Scott Adams]

An interesting new development:

Gluten-free Certification Organization Withdraws Certification from Best Express Foods (makers of Aussie Bites):

https://www.morningstar.com/news/globe-newswire/9146950/gluten-free-certification-organization-withdraws-certification-from-best-express-foods

[RMJ]

GFCO has just withdrawn their gluten free certification of Aussie Bites due to finding levels of gluten above the allowable amounts.  This might be why you reacted to them!

GFCO safety alerts

Edit: (I see Scott and I were posting at the same time)!

[Blue Roan]

WOW!!! And I see that the news just came out this month. This might very well have been the culprit! I have not noticed anymore severe flare ups since quitting Aussie Bites. Probably not a coincidence. Thank you @Scott Adamsand @RMJ!