Questions On Celiac

[Rushmore]

I have been to 3 doctors in 3 weeks. The first time I went was because of constipation. The dr told me to take colace and that was it. The 2nd dr I went to was a rash on my legs that would not go away and itched badly. The 2nd dr asked if I was having stomach problems and heart burn. Shocked that he thought a leg rash could go with my stomach problems. Both of these drs where at a walk in clinic cuz I had no primary dr since moving here. The 2nd dr told me he thought it was Celiac and told me to find a primary dr and start moving forward on this. I then went to a 3rd doctor and she said she thought it was Thyroid not celiac since I have constipation not diarrea. Got that checked and no thyroid problems. Yesterday, I got very dizzy, shaky and head rush so back to the walk in clinic I go. I was old way to much laxative and had a reaction. I now have a appointment to see a gastoroligest (sp). Does this sound like Celiac to you? Constipation, itchy rash, stomach pains, vomit or feeling the urge to vomit. Thanks for any help

[squirmingitch]

First ---- WOW! ---- shocked that the 2nd Dr. at the walk in clinic associated it all & came up with celiac. There are hundreds (or more) on this board who can't get docs to listen to them in respect to celiac even when everything is textbook the docs still deny it could even be a possibility.

Yes, it sounds like a very good possibility you have celiac disease. Both constipation & diarrhea are symptoms of celiac. Some people have one, some the other & then some go back & forth with both.

Others will be on soon to give you better information I'm sure. There are many far more knowledgeable than I.

[mushroom]

Hi Rushmore, and welcome to the board.

Like squirningitch, I am rather impressed that a doctor at a walk-in clinic would put two and two together and come up with a possible celiac diagnosis Many of us have spent liftetimes trying to get doctors to make that connection. Constipation, itchy rash, stomach pains, vomit or feeling the urge to vomit - these are certainly alll symptoms that have been or could be associated with celiac disease. If you want a more complete list of possible symptoms, check here: https://www.celiac.com/articles/1106/1/Celiac-Disease-Symptoms/Page1.html You may find you have some additional ones you didn't realize were associated.

That is great that you have an appointment to see a gastroenterologist. Ask him to run a celiac blood panel for you and keep on eating gluten until the doctor tells you that all testing has been completed. By the way, these are the tests in a complete blood panel:

Anti-Gliadin (AGA) IgA

Anti-Gliadin (AGA) IgG

Anti-Endomysial (EMA) IgA

Anti-Tissue Transglutaminase (tTG) IgA

Deamidated Gliadin Peptide (DGP) IgA and IgG

Total Serum IgA

The last one is important because it is a validator for all the other IgA tests. The DGP is the newest of the blood tests and is proving to be a very specific and accurate test for celiac. Even so, it is possible that your testing could be negative, because there is a known 20% error rate in the testing. Sometimes a biopsy will be positive even when blood testing is negative, so keep that in mind. It is also possible that you have what is known as non-celiac gluten intolerance - pretty much identical symptoms to celiac, but without the visible intestinal damage and negative results on the blood test. Hope all this doesn't confuse you too much

So the first thing to do is to keep the appointment with the GI and get the blood testing. Do come back and post your results for us, with the ranges that the lab used. We are nosy and love to see peoples' results

[Rushmore]

Thank you! I am getting very frustrated and visit this board many times. I have one more question tho - I have a appointment Monday with a GI how long will it take to get results back? I also have a appointment on wed with a dermatologist to look at my leg. Which my 2nd doctor said he thought was dermatitis. Is a skin graff faster and more reliable? I have read where a lot of people have gotten false negative on there blood test. Thanks once again for the help!

[squirmingitch]

I can't answer your question as to how long it takes to get the results back from the blood tests at the GI. And I think that depends too on what country you're in. I'm assuming the US because I'm associating your screen name of Rushmore with Mt. Rushmore.

Since you are presently eating gluten my advice would be to get the blood tests from the GI plus ask him to do an endoscopy for celiac disease. AND when you go to the dermatologist ask him/her to do a biopsy for dermatitis herpetiformis. You need to make sure the derm does the biopsy correctly as well as ordering the tests correctly. Ask the derm if they have experience doing this biopsy. There is a 37% false negative return with the skin biopsy even when performed & tested correctly.

So in short; I would say you should do all tests, both GI & dermatological. That way you have a better chance of getting a solid diagnosis. Then you won't have to go back later & gluten yourself to get more testing done.

Once ALL testing is done then you can immediately begin a gluten free diet & see if that resolves your symptoms regardless of the test results.

Do not hesitate to ask questions on this forum. People are here to help you understand so ask away!

[Rushmore]

Very good guess on where I'm from! Yes, I no longer live in SD but that will always be home. Anyway, I guess I am getting nervous but, ready for the next step. I think either way I am going gluten free when this is all done. I'm a little over weight but the big factor is my kids. I lost my husband years ago he past from heart problems which runs very heavy in his family. I think this would keep my kids on the path of a healthy lifestyle. Even tho I feel a bit overwhelmed right now I know it will get easier. I look forward to feeling better, more energy and my kids being healthy!

[squirmingitch]

Wonderful! That's the attitude to take.

I'm sorry to hear about your husband. It's always hard to lose a loved one. You survived that; you can survive this.

It's always overwhelming in the beginning. In fact I've been through the overwhelming feeling & came out the other side & then went through a 2nd one. I would look at your situation this way too. You have time now to get familiar with the foods you can eat & learn a lot of the rules in advance so you can be prepared when the day comes. So many of us didn't have that chance. It was suddenly thrust upon us & then we were trying to catch up feeling like we were running behind. Preparation will help you to make fewer mistakes.

It's wonderful you are doing this for your kids too. I'm sure you already know they could end up with celiac or sensitivity.

I imagine someone will be along to give you an idea of how long it will take to get the test results back. I didn't have any tests. I just broke out in massive dh rash one day. I was misdiagnosed as having a nervous rash. Then I kept pursuing the subject online & found I had dh. I began to go gluten-free that very day. Well, I thought I was going gluten-free until I discovered there's so much more to it than the average person thinks.

BTW, welcome to the forum!

[mushroom]

I understand the results usually take from one to two weeks depending on the lab and how far they have to be sent. Waiting for results can seem like an eternity, but as squirming says, you can use this time to clean out your pantry, use up the expensive stuff that you don't want to throw out or give away, and donate unopened gluten stuff to a food bank. You will need a new toaster and new wooden and plastic utensils and cutting boards, as well as colander/strainer and replace any scratched nonstick pans, so you have some shopping and organization to do. Eliminating the temptation or the chance of accidental contamination from your home is very reassuring.

You will have to do this kind of reorganization even if there are gluten eaters in the family and you decide not to have a gluten free home. It is harder, but doable. It just requires some training of family members