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A New Celiac Diagnosis(?)

stephsteph

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stephsteph Newbie
stephsteph
Posted

Well, I guess I may finally have an answer for my digestive issues, and perhaps some other symptoms.

Now that I think back, I would say my first symptoms started back in college, with upset stomachs occasionally for no reason, and the first of my migraines, but nothing super bothersome. I chalked it up to stress. After college, the upset stomachs got a little worse, and the migraines got a little worse, and I was tired a lot. Nothing I couldn't handle with a bottle of pepto, excedrin migraine, and a nap. These things slowly kept getting worse. I would complain to my doc that I was tired a lot, they'd run blood tests for anemia, cell counts, etc, but it was always normal. I complained that my head hurt, she sent me to a neurologist, had tests run, and got put on a daily med for migraines. I never really mentioned the digestive problems.

Two years ago or so at Christmas, I noticed that my abdomen was sore. I went to the doctor a few weeks later, and was told it was nothing. No tests or anything. Fast-forward to last October, I went on a cruise, and my stomach was constantly upset. I thought maybe I had picked up a bug, but it stayed upset even after I got home (diarrhea, nausea, stomach cramps). I went back to the doctor, who told me it was IBS, and once again ran the standard blood tests, which came back normal. She told me to avoid dairy and fatty foods, and that was it.

My digestive issues continued to worsen. It was now interfering in daily life - constant trips to the bathroom, constantly complaining that my stomach hurt, and that I was tired. It was such a part of my daily life that I didn't even realize I was even mentioning it to my fiance. I went back to the doctor a few weeks ago, where she once again said IBS, and that there wasn't anything else she could do for me in a very distant manner. I was about ready to burst into tears, when she actually looked at my chart and realized she had never done any diagnostic tests for my digestive issues, and ordered (once again) the blood tests for anemia and such, but also antibody testing for celiacs and a ct scan of my abdomen.

I got a nice letter in the mail today, saying all my blood tests were normal (surprise surprise) EXCEPT for my tissue transglutaminase which was 'STRONGLY POSITIVE', and that we'd discuss those results at my next appointment.

Long story short, I am beginning a gluten free diet :ph34r:

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mushroom Proficient
mushroom
Posted

Welcome to the board, and I am so glad you are finally getting someone to listen to you. All the posters on this forum would have tested you for celiac years ago :P

I would give you one caution - she may want to do an endoscopy of the small intestine with biopsies (instead of the CT scan) to confirm the diagnosis, in which case you should stay on your regular diet until after all testing is done because some healing could take place in the meantime if you stop eating gluten now. While that would be good from your point of view, it may well invalidate the biopsy results depending on how long you have to wait. The biopsy is considered to be the so-called gold standard of diagnosis, and you know how the medical profession is about their tests :blink: With no positive test result they think you can't have it. So stick it out until all testing is completed - you have come this far, and while you feel sure of the answer your doc may not.

If you can get her to order further testing with a positive diagnosis, this should include vitamins A, E K, D, B12 and folate, also mineral levels of zinc, potassium, magnesium and selenium, together with a thyroid test (TSH, free T4 and free T3), as these are common deficiencies in the celiac disease malabsorption disorder (if she has not already done all these).

Stick around and keep us posted. This board is a fabulous resource of information and everyone is always willing to help, no matter the question.

stephsteph Newbie
stephsteph
Posted
  • Author

Thanks! I'm already finding these boards useful :) Would being gluten free for even a few weeks affect the results of a biopsy? I only ask because I'm getting married in two months. I have engagement photos next weekend, dress fittings, and all the other wonderful wedding related events coming up. I'm at a point right now where I'm dreading this stuff because I'm constantly running off to the bathroom. I had already found that not eating=stomach feeling better for a bit (I'm pretty sure my future in laws think I have some sort of eating disorder which I don't). I'm miserable enough that I'm willing to risk a biopsy coming back normal (couldn't it come back normal even if I was eating gluten?) if it means going gluten free and feeling better. :(

mushroom Proficient
mushroom
Posted

Yes, as I said, it is not uncommon to have positive blood results and negative biopsy. It is up to you entirely whether or not you choose to do the biopsy. If you are happy eating gluten free from the blood results alone there is no reason to mess up your wedding plans for the sake of getting a test. The only reason to do the biopsy would be if you needed the doctor's sanction to keep yourself eating gluten free. Many of us here are totally self diagnosed and would not dream of eating gluten just for the sake of getting a medical diagnosis.

And yes, not eating gluten for a couple of months could well make the difference between a positive and a negative biopsy :(

So you have to make the choice of whether to do the biopsy or not if she says she wants to do it. By declining it, you are not ruling out that it would have been positive. By taking it a couple of months from now and virtually guaranteeing it will be negative, you risk her saying, well, you do not have celiac and then she may not be as cooperative in ordering the additional blood tests you need. What it comes down to is you must do what is best for you :) I know what I would do ;)

jencs Newbie
jencs
Posted

Yes, as I said, it is not uncommon to have positive blood results and negative biopsy. It is up to you entirely whether or not you choose to do the biopsy. If you are happy eating gluten free from the blood results alone there is no reason to mess up your wedding plans for the sake of getting a test. The only reason to do the biopsy would be if you needed the doctor's sanction to keep yourself eating gluten free. Many of us here are totally self diagnosed and would not dream of eating gluten just for the sake of getting a medical diagnosis.

And yes, not eating gluten for a couple of months could well make the difference between a positive and a negative biopsy :(

So you have to make the choice of whether to do the biopsy or not if she says she wants to do it. By declining it, you are not ruling out that it would have been positive. By taking it a couple of months from now and virtually guaranteeing it will be negative, you risk her saying, well, you do not have celiac and then she may not be as cooperative in ordering the additional blood tests you need. What it comes down to is you must do what is best for you :) I know what I would do ;)

Well a couple thoughts come to mind, from someone who is struggling with many of the same issues but my bloodwork came back normal. I would be concerned that she sent your blood test results saying you likely have Celiac by mail....to me that warrants a phone call. Also, when is your next appointment? If it isn't this week, I would either call to ask if it can be made a priority so you can figure out what your next steps are or at the very least ask her if she plans to do additional testing that would prevent you from beginning a gluten free diet immediatley.

But...given the fact you have been struggling with this for so long and she only just tested you now, I personally would search for a doctor in your area that specializes in Celiac. Going forward, it makes sense to me to be with a doctor who fully understands the disease.

Good luck with your wedding plans, if anything this should make your wedding and everything associated with it so much better.

GFinDC Veteran
GFinDC
Posted

Going gluten-free is the only treatment for celiac disease. But you should be aware that for many people the first months after going gluten-free are not especially smooth sailing on the digestive front. There can be ups and downs, back-slidings and advances. but a steady progression to healing is not the norm, IMHO. Your best path to heal is to stop eating all processed foods, and cut out wheat, rye, barley, oats, dairy, and soy. If it was me I'd cut out nightshades (potatoes, peppers, tomatoes) too. Also eat only foods you cook yourself from scratch.

  • 2 weeks later...
stephsteph Newbie
stephsteph
Posted
  • Author

UPDATE: Went back to the Dr. today. CT scan was all normal. Since going gluten free, my most annoying symptom (D) has completely stopped. Still some stomach cramping and bloating, but I could still be getting small amounts of gluten from somewhere (prescription meds maybe). I hope as time goes on, this too will get better. I tried to bring up food allergies, she didn't really listen (I'm not surprised). Next time, I guess.

Based on abnormal blood test and diet response, the official dx is Celiacs. She did apologize for not figuring out what was wrong with me sooner, that of all the people she's tested for Celiacs, mine was the first blood test to come back positive... :blink:

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I use Calm because my body doesn’t absorb Magnesium and I only need to take once in evening.                                                    No dairy of any kind (milk, cheese, yogurt, No breads, No past,  No oats, No pizza, No gluten-free beer, No snacks like cake, biscuits, pies, donuts.                                                                                                Many dietitians will tell you to follow a gluten free diet but you have to heal first. Don’t misunderstand me, dietitians are our friends and help us.                                                                                              10% of people with gluten-free will be intolerant to dairy                                                                                  10% can not tolerate oats                                                                                                                     After the six weeks, you can start to add these foods back into your diet. 1 new food every 4 days; this way you know if you react to this food.                                                                                                  Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable.                                                                                                                                              You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea.                                                                                                        Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels.                                                                                  Don't take supplements while healing as your body is not accepting them and they will flush through your body.                                                                                                                                              Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed.                                                                                                                                        How fast you heal depends on the diet you are following… The following are my personal recommendations to healing. I talk to many newly diagnosed people who start the gluten-free diet with pasta, breads, snacks, and pizza. After a month or so, they do not know why they don’t feel any better and still are sick with their original symptoms: They worry the diet is not working for them. For some there may be other factors involved, but most just aren’t letting their body heal properly. I blame the internet, and misinformation it contains. People want a quick fix, not realizing this is a life long disease. They need a good support group, with people who have been through this and knows what works! This is what I have found will work for you. 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Oats shouldn’t be tried for 1 year after being diagnosed; then start with 1/3 of a cup. Only gluten-free Oats are acceptable. You should have results within 3 days of following a correct healing diet. Bloating should be leaving, migraines should be gone. Might take bowels a little longer to respond. If you start with 5 times a day on the Citrucel and cut back as your bowels return to normal; then use 1 Tbsp. daily. This works if you have constipation or diarrhea. Meanwhile make sure you have had a Dexa test (bone density) and a blood test to check your vitamin and mineral levels: Zinc, D,K,B,C and iron levels. Don't take supplements while healing as your body is not accepting them and they will flush through your body. Have you had a breath test for Dairy, Fructose, and bacteria overgrowth? Should have done when first diagnosed. Remember to have a tTg IgA blood test repeated at 6 months then every year after, with another scope done in 3 years. Only way to know if you are healed. I don’t have all the answers; we are learning everyday new ways of doing things, but this is a start! Remember to have a tTg IgA EMA blood test repeated at 6 months then every year after 
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