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Finally Made A Doctor's Appointment...

MaryV83

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MaryV83 Newbie
MaryV83
Posted

This is my first post here and I'm glad I found this forum. I feel like I'm not alone, anymore. 

 

After dealing with what I thought was lactose intolerance for nearly 20 years and many, MANY symptoms of gluten intolerance, I have finally taken the next step to resolve this on-going issue. I have scheduled a doctor's appointment to get tested for Celiac. I have so many issues and symptoms.

 

The straw that broke the camel's back was last night when I woke up at 3am, ran to the bathroom and nearly experience an accident out of both ends. I was miserable, couldn't fall back to sleep and realized that this was it. I can't live this way. I have dealt with depression, anxiety, thyroid issues, abdominal issues, bloating, gas, diarrhea, nausea, lactose intolerance, extreme tiredness, continue tingling in my hands and fingers, itchy skin, teeth issues... really the list goes on. 

 

I had been tested for diabetes a few years ago, and the doctor told me it was thyroid issues. I was to see an endocrinologist and simply put it off. I now realized that I should have taken care of this a long time ago and just ignored it. So, this time, I want to make it right, do the testing and see what's going on. 

 

I hear that you should continue to consume gluten prior to the testing to ensure accurate test results. Since this is all new to me, any advice would be appreciated. 

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Fenrir Community Regular
Fenrir
Posted

Well, you sound like a pretty typical person with Celiac disease. Everything you listed is something Celiac can cause. You may in fact be lactose intolerance because celiac can often cause it. So, you can have both at the same time and if you have celiac disease it may go away once you are off of gluten. 

 

Yes,  you should keep eating gluten so as to avoid false negative tests. Also, your doctor is likey to order a biopsy if your labs come back positive. 

 

I jusst got my blood test back last week and it was positive and now I'm waiting for my biopsy appointement. My gastro doctor ordered a EGD for the biopsy and said I should also have a colonoscopy because if I have celiac they sometimes have colon issues as well and then they can rule out Crohn's. 

Celiacandme Apprentice
Celiacandme
Posted

I'm glad you've made an appointment. Hope it isn't too far away. Make sure they run the full celiac panel. Some doctors don't for some reason. I'm sorry last night was so rough. Hope you can sleep tonight.

 

Since you have been eating gluten you should continue for testing purposes. For me - my numbers were all high from the initial blood work. My endoscopy was two weeks after I received blood results. I spoke with my doctor and she was fine with me going gluten free immediately. (after I rec'd the blood results) It takes a while to get out of your system and in two weeks it wasn't going to change the outcome of the biopsy. If you have villi atrophy they'll be that way until you've been on the gluten free diet for quite some time.

 

The issue, from what I understand, is when people go gluten free and then want to be tested. If they've been gluten free for some time they won't have accurate results. Happens when a whole household goes gluten free and then a member decides to be tested months later.

 

I hope you get answers soon and can be on the road to recovery. Keep us posted.

MaryV83 Newbie
MaryV83
Posted
  • Author

Hi all. I have a confirmed appointment for tomorrow morning! I am actually excited about going. I will keep you posted on the outcome. 

NoGlutenCooties Contributor
NoGlutenCooties
Posted

Request that the full Celiac be run, to include the following:

 

Total Serum IgA

tTG-IgA

tTG-IgG

EMA-IgA

DGP-IgA

DGP-IgG

 

You can be negative on some of the tests and positive on others so it is important that they run the full panel.

Good luck - and congratulations on taking control of your health.  You have to be your own advocate.

 

Oh - and it's a good idea to request a full CBC and nutrient level tests, especially Vit D, iron, and B vitamins.  Celiac can cause deficiencies that you'll want to know about so you can correct them.

1desperateladysaved Proficient
1desperateladysaved
Posted

I want you to get definitive answers. There is hope.  Pretty much everyone here came to that place when they couldn't keep going.  I did , after 30 years of foggy fatigue and bloating.  I am happy to say that my mind is clear and I have some energy again.  I hope we will hear you telling a similar story in your future!

 

D

MaryV83 Newbie
MaryV83
Posted
  • Author

I had my appointment this morning and doc took a ton of blood work and requested stool samples. He is testing for IBS/any other colon issues, thyroid issues, and many other things, but most important, celiac disease. He mentioned that an endoscopy may be in order, too. In the mean time, he told me to stick with a bland diet, and I have go to back in a month. Glad to know that we were on the same page to test for celiac disease. I think I can start to see light at the end of the tunnel.

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Fenrir Community Regular
Fenrir
Posted

I had my appointment this morning and doc took a ton of blood work and requested stool samples. He is testing for IBS/any other colon issues, thyroid issues, and many other things, but most important, celiac disease. He mentioned that an endoscopy may be in order, too. In the mean time, he told me to stick with a bland diet, and I have go to back in a month. Glad to know that we were on the same page to test for celiac disease. I think I can start to see light at the end of the tunnel.

I think sometimes it is very helpful if the patient (like you) go in to the visit having a good idea of what might be wrong. GI issues are complex so the physician can only go on the information the patient gives them and the labs that they can order. So, if the patient can communitcate their symptoms well and even ask for certain things to be checked out it can help the Dr. out quite a bit.

MaryV83 Newbie
MaryV83
Posted
  • Author

My doctor called with my results and said my celiac panel came back negative and is waiting my stool sample results. They mentioned my glucose levels were high, but refused to retest me using a fasting glucose test. (Diabetes type II and prediabetes runs in my family - mom, sister and grandmother on both sides had/have it). I spoke with them today and explained that the "bland diet" that the doctor put on my is making me sick. I was sick last night and I'm feeling stomach cramping today. They said I needed to stick with pasta, potatoes and starchy foods. I'm so frustrated because my sugars are high, yet I'm getting sick on the stupid diet they are have told me to stick with. 

 

I have contacted another doctor to get a second opinion and to get another look at my glucose levels. There is a definite cause for concern when my sugars are high and I'm still sick on a diet that the doctor has to me to stick with.

cyclinglady Grand Master
cyclinglady
Posted

But a cheap meter from Walmart and test yourself. give yourself piece of mind for less than $30. Check out YouTube to see how to do it. Visit Blood Sugar 101 to learn more about diabetes, what are acceptable glucose numbers, how to test, and how to change your diet.

Really? Telling you to eat potatoes and pasta? It sounds like they are not worried about neuropathy, itchy skin, vision loss or losing a foot!

nvsmom Community Regular
nvsmom
Posted

Dr Berenstein's books on Diabetes are pretty helpful for turning around high blood sugar.

 

Do you know what celiac tests the doctor ran? Many doctors only run the tTG IgA, which isn't enough as it misses somewhere between 5-25% of all celiacs. Cooties listed the tests you should ideally get done.

 

There is also the possibility on non-celiac gluten intolerance (NCGI) which feels just as horrible as celiac disease but does not involve villi damage. Unfortunately there are no reliable blood tests for that - only a positive response to the gluten-free diet is diagnostic.

 

Best wishes.

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    • catnapt
      how much gluten do I need to eat before blood tests?

      By catnapt · Posted

      after several years of issues with a para-gland issue, my endo has decided it's a good idea for me to be tested for celiac disease. I am 70 yrs old and stunned to learn that you can get celiac this late in life. I have just gradually stopped eating most foods that contain gluten over the past several years- they just make me feel ill- although I attributed it to other things like bread spiking blood sugar- or to the things I ate *with* the bread or crackers etc   I went to a party in Nov and ate a LOT of a vegan roast made with vital wheat gluten- as well as stuffing, rolls and pie crust... and OMG I was so sick! the pain, the bloating, the gas, the nausea... I didn't think it would ever end (but it did) and I was ready to go the ER but it finally subsided.   I mentioned this to my endo and now she wants me to be tested for celiac after 2 weeks of being on gluten foods. She has kind of flip flopped on how much gluten I should eat, telling me that if the symptoms are severe I can stop. I am eating 2-3 thin slices of bread per day (or english muffins) and wow- it does make me feel awful. But not as bad as when I ate that massive amnt of vital wheat gluten. so I will continue on if I have to... but what bothers me is - if it IS celiac, it seems stupid for lack of a better word, to intentionally cause more damage to my body... but I am also worried, on the other hand, that this is not a long enough challenge to make the blood work results valid.   can you give me any insight into this please?   thank you
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