Tough Day

Another new study regarding Celiac disease and how symptoms, other than persistent diarrhea, does not indicate intestinal healing.

I’m not going to go into the details of this study – but over 1000 people were tested. Most had ongoing symptoms that were intermittent or unrelated to gluten consumption and completely irrelevant when looking at blood tests or ongoing gut damage. The only symptom that indicated there was a problem was persistent diarrhea. Persistent diarrhea indicated that the gut had not healed. Otherwise, you have no idea if the gut has healed or not.

Here is the problem – most of us think that if we have symptoms, then we are doing damage to ourselves. Or if we aren’t having symptoms we are still doing damage if we eat a crumb or make a mistake or get cross contaminated. But this study denies that premise. Symptoms and gut damage are unrelated. So, what would be causing the symptoms if it isn’t ongoing gluten ingestion?

And I’m not even certain we can live in a 100% gluten free world. It means only eating whole foods, cooking at home in a gluten free kitchen that gluten has never crossed the threshold of, and never, ever eating outside the house. I’m just not sure that is realistic.

Then there is the other side of it – if we go to the doctor and our TTG numbers are not in the “normal” range after X amount of time, then we get blamed for continuing to eat gluten. While we might have made mistakes, we cannot guarantee we haven’t ingested gluten accidentally.

I’m just discouraged today folks. I don’t think we have any good options. The only way to truly tell if we are healing is repeat biopsies. Those are expensive and a pain in the patootie. Neither symptoms nor blood work are accurate.

I’m concerned that the only drug that is in Phase 3 trials is only testing against symptoms to determine if their drug is working. But the problem is, these studies have just shown that symptoms are not a good indicator of gut protection.

I’m confused about a post I read today where someone ordered eggs and hash browns and did not get sick after. But they were angry that they were up charged for it to be “gluten free”. Even though, they don’t know what, if any, extra caution was used in preparing their meal. For all the complaints about cross contamination at restaurants, this one boggles my mind. I would gladly pay extra for extra precautions being taken to ensure I would not get sick.

I just can’t get a beat on this disease. I think we don’t know a lot and much is still being learned. I thought that if we don’t have symptoms we are okay. I thought that if my TTG was in the normal range I was doing okay. I thought a drug in Phase 3 trials would make me totally excited. I thought that paying more to eat gluten free was normal and accepted. I thought a lot of things that are today in disarray.

This has been a difficult summer so far. Nexvaxx was cancelled without warning and without much information. All these studies say that we could all be failing at managing our disease. I have lost faith in doctors due to a friend’s child being really, really sick and they don’t know why.

I’m just struggling today and have been for a bit over this disease. I just don’t see a good way out. I’m one of the ones with persistent diarrhea (daily), so I’m not healing. I even knew it. My last biopsy was in 2017 and still showed Marsh 3 damage. I was diagnosed in 2013 by triple positive scores and my first endoscopy was 2014, about 18 months later) with Marsh 3 damage. Since 2015 my TTG numbers have been in the normal range – yes, it took me that long to get them down. I’ve got swollen lymph nodes in my groin that are causing a great deal of concern and I don’t want to go to the doctor out of fear. Fear of the worst – EATL – Enteropathy Associated T Cell Lymphoma. The big one. The Celiac cancer with a cure rate of 20%. That one. The one we are all trying to avoid by staying gluten free. So, yes, I’m struggling. Hopefully, I won’t be posting about my battle with EATL. I’m guessing that’s why all of these studies about no symptoms does not mean healing gut is really weighing on me.

Also, don’t talk me about going to the doctor – I’ve already heard it from my husband. 😉 I’m going out of town next week, then 10 days later the kids go to school. I’ll make an appointment to go to the doctor during their first week of school. I’ll go to the doctor the second week of August.

Sorry for the Debbie Downer bit. I’m just struggling. I know lots of us go through this – its just today it has hit me hard. Too much bad news on the Celiac front for me today. Stressed about what could be happening in my body. Just too much.

I’m just gonna start drinking today (its after noon here) and hope for a better day tomorrow. There is an inflatable slide at my pool to cheer me up!