Celiac Disease vs. Gluten Sensitivity, scientifically explained

Thanks for this post, much of it more science than my brain can absorb but I think I get the gist of it.

My own experience with gluten was puzzling. For a long time I thought there was no problem, had the celiac test which was negative so no removal of gluten from my diet. But at the end of my rope my DH saw an article that suggested that some people were "gluten sensitive" and the test would not be accurate for them.

I removed gluten from my diet and within just a few days my bleeding stopped. Wow. Before that time (gluten removal) I actually thought that bread was calming to my stomach. After almost 2 years now gluten-free and looking back what I think occurred was eating bread (and wheat products) caused my colon to grind to a halt, constipation instead of D made it look normal. The bleeding was a by-product of a wounded gut but the stopping of bleeding was my signal that gluten was a problem but not the only one.

Going gluten-free was a great start but in order to reduce/eliminate all the other life-altering UC symptoms it took more than gluten-free. The SCD diet which works for many people included many foods that my gut couldn't handle. Once I paid 100% attention to food eaten, observed reactions and eliminated problem foods I began healing.

It's been a long road but as my gut healed I'm able to eat a few more foods not possible previously. But not gluten. That may never be part of my diet again and that's OK with me.

Did gluten sensitivity cause my UC? I personally think it was a combination of factors that made me susceptible to whatever causes UC (my guess is bacteria). Just a guess that will have to wait for a Nobel Prize scientist to confirm.

I haven't read the article yet but I have been very pleased with the results of going gluten-free. It took me a long time to make this change, a lot of my resistance was due to the fact that I'd been tested several times, including biopsy on EGD, for celiac and it was always negative. I'm glad I finally decided to try a gluten free diet.

kazbern
What made you decide to go gluten free?

Interesting. I just came off an Orgain diet to rest my bowel and I kept Gluten free. I tried gluten free before and didn't notice any difference. This time my gut feel like it's healing. Of course it could be the other stuff I'm taken too. It's hard to tell when you're taking so many drugs/supplements. I'm going to try and stay gluten free until I'm in full remission..then I can test the waters with Gluten if I dare!

InSoFla asked
Curious, which foods on the SCD can't you tolerate?

My biggest problem was milk and milk products even the 24 hour SCD yogurt which I loved so much. Even hard cheese was a problem. The "wet" milk products caused D and more urgency. Hard cheese caused constipation.

Fruit of all types was bad also and I am a huge fruit lover, always have been. Had to give it up for about a year and a half.

In the beginning nuts, especially almonds with skin on were very difficult to process causing C. I know people say to go easy on nuts and nut flours but there was so little else available to eat that I just kept nuts in my diet and hoped for the best. Soaking nuts and de-skinning almonds helped a lot.

Some vegetables although legal on SCD were a problem such as broccoli, tomatoes and peas, plus garlic, onions and ginger.

Coffee and almost all tea (even herbal) excited my gut too much so they were cut out, boo-hoo.

Almost all supplements caused problems even common ones that many people here swear by.

The good news is that after 1.5 years some dairy, some fruit, many veggies, some teas and many nuts are back in my diet. I test "out" foods all the time to see if my gut can now handle them. However gluten and wheat products will not be added back for many years if ever.

My list of "out" foods must sound horrible to someone who eats a full Standard American Diet but UC symptoms were worse. All I can say is it's been worth the detective work and discipline. And I'm now able to eat more different foods.

P.S. Wine (any color) and other alcohol (vodka, gin, sake) also make my gut upset the next day so until further healing they are out. They are SCD legal I believe.

imagardener2

Very interesting - it goes to show how individual this disease is and how it affects people so differently.

As you may know I am on LDN, which put me in remission. Although it took a good 6 months for it to finally enable me to eat "normally". Prior to the 6 months, the only thing I could eat was protein (chicken, fish, beef) and protein shakes, if I even attempted anything else, I would start bleeding.

However, after the 6th month, I was able to expand my diet to include broccoli, cauliflower, salads, pistachios, cashews, strawberries, mangos, raspberries, blackberries, just to name a few - without any bleeding.
I was even able to add an occasional piece of bread, or slice of pizza without paying the price for it, although I don't do it often (don't want to tempt the Gods, haha).

So I think my colon has healed. I'm still on LDN and on't intend to stop it.

Is LDN something you would ever consider?

imagardener2

I understand your reticence to add anything new.
Since you are at 98% remission, that's pretty good.
Maybe next time you ar at the GI, you can ask about LDN and see what the reaction is, so you have something in your back pocket, no? You could always show her the Dr. Jill Smith studies.

Back to the gluten, I have a few questions for you:
Did you suffer from joint/bone pains?
If so, did you find any difference with going gluten free?

I was rather surprised, when reading the full article, at the extra-intestinal symptoms of gluten sensitivity: joint and bone pains, muscle cramps, numbness of feet, and a whole host of others as well.

Did you suffer from joint/bone pains?

Yes, for years I've had right hip pain but assumed that was from years of tennis although it started after UC. Lately, and not sports related, I've had left elbow pain that I would call arthritic. Gluten-free has not prevented this and it started after over a year of being gluten-free.

I believe there are areas of inflammation in various joints as well as my colon even though my overall colon inflammation has been reduced greatly (anecdotally observed by fewer symptoms). My friend who is a nurse and my age says it's just a result of getting older.

Gluten-free is not the be-all and end-all for my inflammation but it was a big start to begin healing. I will continue gluten-free as well as keeping to a diet that reduces inflammation. That means less red meat which I love :-(

InSoFla, I have had a long struggle with joint pain, but even before I went gluten free I had that pretty well controlled with sulfasalazine.  I still had knee pain and some SI pain, though, and I was hopeful that going gluten free would resolve that, but it hasn't.  Maybe my knee pain is slightly better.  My SI pain is the same.

As far as concentration, that was the biggest change for me.  I had been having a lot of problems with focus and attention for the last couple of years and I'd attributed it to falling estrogen levels.  However, I feel mostly back to my regular self now, gluten free.  I have to say that I believe the gluten sensitivity is linked to my hormonal changes - somewhere I read that women in perimenopause or menopause are much more likely to be gluten intolerant than younger women.

I am not a person prone to depression.  I'm rather hypomanic.  I have not noticed any changes in that regard, although perhaps my husband would disagree!  My energy levels in general are much improved.

kazbern

Too bad going gluten free didn't solve all your joint pains
But it's great to hear about the mental clarity and concentration.