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Wait, Or Diet Now?

whistle

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whistle Rookie
whistle
Posted

The earliest gastroenterologist appointment I can get is July 23rd. If I have a chance at a diagnosis from a biopsy, I don't want to ruin it, but I'm also anxious to find out if a gluten-free diet would help me. I'm disabled by my symptoms. Among many other things, I don't remember what it's like to have energy. I think I want to try the diet right now, so I was wondering if it made sense to go gluten-free for three months, then back on gluten for the next three. If I do react positively to the diet, I would have something convincing to tell the doctor, too.

Part of the reason why I don't want to throw away the chance at a positive biopsy is that I know my father would take that more seriously than the theory of his space-cadet daughter. He had a pre-cancerous polyp removed from his bowel. He also gets diarrhea after some meals - garlic, he figures is one culprit. He has arthritis, and fainted once for no apparent reason. He also has other things which I so far haven't heard related to celiac: labyrinthitis and non-melanoma skin cancer.

I'll bring it up with my family soon, and my sister will likely be willing to investigate it for herself. She has depression, hair loss, tinnitus, occasional diarrhea, occasional dizzy spells, bloating, distended abdomen, and she also fainted once for no apparent reason.

All advice and commentary is appreciated. Thanks.

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MySuicidalTurtle Enthusiast
MySuicidalTurtle
Posted

If you want accurate results you HAVE to be eating gluten. There are other tests you can take: blood and stool. The blood ones can come out with a false negative, in which a biopsy would be needed. If you get a positive you don't really need the biopsy. Additionally, you could always just do the diet and no testing, if you feel good. It is all up to you.

If you do decide to do other testing sooner than your July appointment, you may not want to tell your family in case it comes back false negative so you don't have to be told you are overreacting and what not.

I know from my experience and my family's that as time went on we were getting sick from more and more foods. I got to the point where tomatoes, fruits, and even plain items made me sick. After going gluten-free, I healed and can enjoy all those spicy, acidy, and yummie items. This sounds kind of like your father and a polyp is definitely not good. He sounds like he has some issue.

Good luck!

ravenwoodglass Mentor
ravenwoodglass
Posted

You are in a tough spot. If you have been very ill for a long time I would go ahead and do the diet after I had blood work drawn for the celiac panel. Your regular doctor can order that. Then give the diet a shot. You could try adding gluten back in after 3 months, if your symptom resolution hasn't been what you thought it would be, and see how you react. If gluten is an issue you will most likely have a violent reaction to the challenge that will remove all doubt. Some doctors will diagnose based on dietary response, especially if you have a positive blood test and resolution of your problems. What got my family to really believe that gluten food was killing me wasn't my diagnosis but my recovery. They all agreed to testing after I had been gluten-free for a few months and all were also positive. Including my husband.

whistle Rookie
whistle
Posted
  • Author

Thank-you, Turtle and Raven, partly for the information and partly for just helping me clear my head. It's hard not to get confused and freaked out when brain fog and anxiety are symptoms of mine.

Unfortunately, where I live they don't do the celiac blood panel, they just do one of the tests (transglutaminase, I believe) and I tested negative. I don't know if they do the stool test here, but if they do I'd be pleased to do the icky deed. How conclusive is it, and what are they checking for?

Outside of that, I don't think I can wait to start the diet. You're right that my recovery would be proof enough for my family. And I'll try going back on gluten later to see how I react to that as well.

Teaching an old dog new tricks might not be so hard if my dad has the possibility of getting garlic back. And of course he doesn't like the sudden reaction he gets from food, just out of the blue, and he doesn't really know why. "There must have been a bit of garlic or maybe oregano or...something..."

Good health to you and yours!

:)

ravenwoodglass Mentor
ravenwoodglass
Posted
.

Teaching an old dog new tricks might not be so hard if my dad has the possibility of getting garlic back. And of course he doesn't like the sudden reaction he gets from food, just out of the blue, and he doesn't really know why. "There must have been a bit of garlic or maybe oregano or...something..."

Good health to you and yours!

:)

That sounds familiar. The sudden bathroom dash was so very familiar to me for over 15 years. Well actually 10 the last 5 I just lived in the bathroom. :angry: I blamed everything but the wheat I shoveled in my face multiple times every day. After all if your stomach is upset your supposed to eat toast to settle it right? If your Dad will visit us here and read some posts it might also give him a bit of incentive, especially if he has any other health conditions.

whistle Rookie
whistle
Posted
  • Author
I blamed everything but the wheat I shoveled in my face multiple times every day. After all if your stomach is upset your supposed to eat toast to settle it right? If your Dad will visit us here and read some posts it might also give him a bit of incentive, especially if he has any other health conditions.

How true, how true. I've often shoveled toast, bread, and soda crackers into my face to settle my stomach, and if it worked I wouldn't have to take rabeprazole sodium every day to keep from having acid indigestion 24/7. You know, after a few days of taking that medication I honestly said this to myself,"What's that weird feeling in my stomach? Oh, it's comfort!" And the more run down I get, the more I grab sandwiches, cereal, and processed foods because I'm too tired to cook.

Yikes!

I'll do my best with my dad, and I'm more optimistic now that you guys calmed me down. B)

whistle Rookie
whistle
Posted
  • Author

Hey, I just came up with a peculiar idea....

I have gotten "eczema" all my life. When I lived in a more humid climate I got it all the time, and never knew what triggered it. Now I'm in a dry climate and I only get it from contact with stuff like oil paint, adhesive bandages, etc. I get very dry skin but can avoid outbreaks of the rash. I don't know if it sounds like DH or not. I'd mainly get it inside my elbows and between my fingers, unless it was triggered by contact with something in another area. It's very, very itchy and bumpy and often oozes clear liquid. In my elbows it would become a big patch.

Does that sound like DH? If so, would it make sense for me to create an outbreak and see a dermatologist for a diagnosis?

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ravenwoodglass Mentor
ravenwoodglass
Posted
Hey, I just came up with a peculiar idea....

I have gotten "eczema" all my life. When I lived in a more humid climate I got it all the time, and never knew what triggered it. Now I'm in a dry climate and I only get it from contact with stuff like oil paint, adhesive bandages, etc. I get very dry skin but can avoid outbreaks of the rash. I don't know if it sounds like DH or not. I'd mainly get it inside my elbows and between my fingers, unless it was triggered by contact with something in another area. It's very, very itchy and bumpy and often oozes clear liquid. In my elbows it would become a big patch.

Does that sound like DH? If so, would it make sense for me to create an outbreak and see a dermatologist for a diagnosis?

It does sound like DH. Chances are when you are doing your challenge a outbreak will appear. If you do see a derm and get a positive biopsy from that then the endo would not be needed for diagnosis. A diagnosis of DH is a diagnosis of celiac.

ang1e0251 Contributor
ang1e0251
Posted

Just wanted to add that it might be helpful to your family if you took some before and after pictures. My friend said her family was looking at pictures from after her husband's heart attack and he looked so ill and old, she had to walk away. I know my whole complexion has changed since going on the GFD, if I had allowed pictures I could have a better comparison.

Also before you have a test for DH, print out the proper testing procedure on this website. The test can done incorrectly for a negative outcome.

whistle Rookie
whistle
Posted
  • Author

:) I'm so grateful for your guidance. It sounds like a plan. I'll start the diet. I'll let you know how things go.

It's true I haven't felt very photogenic lately. I'll take some pics too ----> :P

whistle Rookie
whistle
Posted
  • Author

I started a gluten-free diet 4 days ago, and I've already seen improvement in one way. As I mentioned earlier, I've been taking a prescription acid reducer in order to prevent constant acid indigestion. If I stop taking it for a couple days I get so acidic it seems to expand beyond my digestive system - like my eyes feel acidic. I stopped taking the pills 2 days before the diet, and it made me feel horrible as usual. On the first gluten-free day the acid started to subside, and for the last 2 days I've had no stomach trouble at all. This is astounding! I've had slight indigestion after eating dairy so I've cut that out as well. I guess I'm onto something!

I suppose it could be gluten intolerance, or wheat allergy, but I think it's celiac. I saw two pictures of DH that look exactly like my rash.

Thanks again for all the help! Where would I be without you?

:):):)

ravenwoodglass Mentor
ravenwoodglass
Posted
I started a gluten-free diet 4 days ago, and I've already seen improvement in one way. As I mentioned earlier, I've been taking a prescription acid reducer in order to prevent constant acid indigestion. If I stop taking it for a couple days I get so acidic it seems to expand beyond my digestive system - like my eyes feel acidic. I stopped taking the pills 2 days before the diet, and it made me feel horrible as usual. On the first gluten-free day the acid started to subside, and for the last 2 days I've had no stomach trouble at all. This is astounding! I've had slight indigestion after eating dairy so I've cut that out as well. I guess I'm onto something!

I suppose it could be gluten intolerance, or wheat allergy, but I think it's celiac. I saw two pictures of DH that look exactly like my rash.

Thanks again for all the help! Where would I be without you?

:):):)

Sounds like you are having good results. I hope things continue to improve.

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      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
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