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Pretty Sure I Have Celiac

KiwiBrit

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KiwiBrit Rookie
KiwiBrit
Posted

Hello,

After a couple months of being ill my Dr thinks I have a gluten allergy. She suggested I follow a gluten free diet for 3 weeks to see if it helps.

My symptoms were/are vertigo, lightheaded, extreme fatigue, tingling/numbness in hands and feet, heart palps (double beats, extra beats), neausea, stomach pains/gassy/bloating, headaches, weight loss, diarrhea. I was unable to do anything but lie on a couch. Since this started the end of June I have been in the ER 6 times. Twice for dehydration.

I finally got a new Dr. She performed a Cat Scan with/without contrast. I guess the contrast I had went thru my system really quick and by the time i had the scan done it was in my bowels. Apparently normally it stays in the organs. But didnt with me. The scan showed my organs are normal but this was not. She then sugg following a gluten free and dairy free diet for 3 weeks.

I am now on day 26 and doing SO much better.

I went to see a Gastroenterologist last week. She asked me to go back to eating gluten so they could test me blood. I have never said NO so fast in my life! She said the only way to test was bloodwork. She also said a scope down my throat would help as well. We decided on taking blood that day and waiting for the results.

This past Friday was the best day I have had in months. I feel like im finally getting better. Even though I am still quite lost on whats 'safe' I am getting by.

The medical bills are coming in, its not good. I have decided to not do any further testing. I just think its unnecessary.

I guess I am writing this here to see what you all think. I have never felt so alone in my life.

I have eaten a couple of things that I thought was gluten-free, only to get very sick. Im guessing that happens a lot. I am keeping a food diary for that very reason.

I hope I havent rambled on too much. I am finally able to sit here and type all this.

Thank you,

Michelle

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eatmeat4good Enthusiast
eatmeat4good
Posted

I'm so sorry you have had to go through all of that.

I'm glad she finally suggested going gluten free and it is wonderful that it is helping you. I understand about the medical bills...and feeling alone. It sucks. I hope you will read read read here about cross contamination and trace gluten because it is the only way to get really well. A lot of people suggest just eating meat, veg, fruit and nuts and not trying to eat gluten free products until you heal. That is very good advice. I don't blame you for not getting any more testing. When the only solution is eating gluten free and you already know it then testing seems like a waste of time and energy not to mention making yourself sick to satisfy their tests. Hang in there and if you have any questions feel free to ask. There is a lot of good information here...reading here is the only way I got well.

Takala Enthusiast
Takala
Posted

You make perfect sense to me : )

I haven't puked up a positive blood test..... just bad brain scans and spinal stuff.... oh, and the neuro symptoms...... after years of avoiding the stuff, and having some sort of spontaneously unexplainable to the medical profession "cure," (neuro from hell

lucia Enthusiast
lucia
Posted

I'm the same as you. I've never been medically diagnosed with a gluten issue, but I respond to a gluten-free diet. (And I get really, really sick if I eat even a small amount of gluten.) As you describe, if I wanted to be tested I would have to eat gluten, and I have balked at that. Luckily, my primary doctor accepts my own word that I respond to the gluten-free diet.

After I realized I responded to the gluten-free diet, I actually went to the Celiac Center at Columbia, supposed to be the best in the world for our condition. I have very good insurance, so it felt like the safest thing to do. I didn't feel like it helped at all, but I had already started treating myself based on advice I got on this board. At the Celiac Center, I had a battery of tests that were negative, I saw a dietician whose advice I found useless, and I was released without any additional protocol besides to avoid gluten.

That said, you should be careful to treat any vitamin deficiencies you may have, look out for additional food intolerances, and make sure you DO see a doctor if you aren't getting better since we often have additional autoimmune diseases.

Otherwise though, I'd advise spending some time here on the board. The people here are wonderfully supportive and filled to the brim with knowledge about this condition.

KiwiBrit Rookie
KiwiBrit
Posted
  • Author

Thank you for the replies.

I will find out the blood test results 2moro.

Since im getting my strength back I hope to be here more often.

Thanks

KiwiBrit Rookie
KiwiBrit
Posted
  • Author

I still dont have my test results. They are now telling me Friday.

I do have a question. I did a search here and can't really see anything recent on this. I hope its ok to ask here.

My Dr said it was ok for me to start eating dairy again. I had stopped 4 weeks ago to help me heal.

So I started with one slice of cheese (Walmart white cheese, packaged) with my sandwich yesterday and today.

Tonight I am not feeling so great. The only new thing I have introduced is the cheese.

I looked it up in my Grocery Guide and it doesnt show anything. I guess this means the company wouldnt give info.

Does anyone know? Im obviously not going to eat cheese for a few days and see how I feel.

Thanks.

kareng Grand Master
kareng
Posted

KiwiBrit,

The reason they tell you not to eat dairy is that the villi that Celiac destroys is the part that digests the dairy. Usually, you would wait a few months then try the dairy. Many people, Celiac or not, don't digest it well but are helped by the Lactaid type pills. It could turn out that you just don't do well with diary, but its a bit early to know for sure.

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pricklypear1971 Community Regular
pricklypear1971
Posted

If its individually wrapped plastic coated processed cheese slices who knows what's in it. I don't call that cheese, personally.

If it's white block cheese - white cheddar, Monterrey jack, etc. it was probably ok. You've got to learn to say no to food you can't verify or read ingredients on. It simply isn't worth the risk.

KiwiBrit Rookie
KiwiBrit
Posted
  • Author

Thanks Karen. I plan on not eating any for a while.

pricklypear1971 - I agree. Lesson learned. :)

KiwiBrit Rookie
KiwiBrit
Posted
  • Author

Finally got my test results back. All came out negative (which she thought they might). She said that since I am feeling much better following the celiac diet, that no more testing is needed. She said to call her if anything changes.

Thanks for your support.

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    • rei.b
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      Okay well the info about TTG-A actually makes a lot of sense and I wish the PA had explained that to me. But yes, I would assume I would have intestinal damage from eating a lot of gluten for 32 years while having all these symptoms. As far as avoiding gluten foods - I was definitely not doing that. Bread, pasta, quesadillas (with flour tortillas) and crackers are my 4 favorite foods and I ate at least one of those things multiple times a day e.g. breakfast with eggs and toast, a cheese quesadilla for lunch, and pasta for dinner, and crackers and cheese as a before bed snack. I'm not even kidding.  I'm not really big on sugar, so I don't really do sweets. I don't have any of those conditions.  I am not sure if I have the genes or not. When the geneticist did my genetic testing for EDS this year, I didn't think to ask for him to request the celiac genes so they didn't test for them, unfortunately.  I guess another expectation I had is  that if gluten was the issue, the gluten-free diet would make me feel better, and I'm 3 months in and that hasn't been the case. I am being very careful and reading every label because I didn't want to screw this up and have to do gluten-free for longer than necessary if I end up not having celiac. I'm literally checking everything, even tea and anything else prepacked like caramel dip. Honestly its making me anxious 😅
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      I was tested for celiac at the same time, so I wasn't taking naltrexone yet. I say that, because I don't. The endoscopy showed some mild inflammation but was inconclusive as to celiac disease. They took several biopsies and that's all that was shown. I was not given a Marsh score.
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