Confused And Frustrated

[Arwen2k3]

Hello All~

This is my first post and I am looking for some input. I'll give a bit of background so you understand where I'm at.

For years I had suffered from what seemed to be random horrible stomach cramping and constipation. After my fourth pregnancy I started experiencing symptoms that were new and disturbing they are as follows: continued cramping and constipation with bouts of diarrhea, horrible anxiety and sometimes depression, irrational anger and irritability, chronic hives all over my body with lip swelling, heart palpitations, severe fatigue to where getting out of bed seemed impossible, dizziness or woozy feeling, occasionally feeling like my arms were really weak especially in the morning, and bad muscle pains in my back where sections would knot up like rocks.

I eventually got my thyroid checked and found that I have Hashimoto's. I did not want to go on thyroid meds for life and so decided to try alternative measures. I started working with a natural MD for adrenal fatigue who placed me on high, high potency supplements. This actually lowered my TSH to a normal level and although the thyroid antibodies were still present they were lower too. However, it has been a year of this and I still battle some fatigue, stomach bloating to where I look pregnant with very loud and uncomfortable gurgling in my right side after I eat, anxiety, and occasional hives. I know that if I were to come off my supplements I would go back to how I was. I felt like I was dying.

Now my son was just diagnosed with celiac by testing and biopsy and so was my mom. I had thought that I would turn up positive as my symptoms are present, I have 1st degree relatives and I already have another autoimmune disorder that is considered high risk for celiac. But my tests came back as follows:

tTg <3 (0-3)

Immunoglobulin A 177 (81-463)

Gliadin IgA 5 (0-19)

What would you make of this? What would you do? I hoped it would be an easy clear cut thing, because I just want to know what is wrong with me!

I so appreciate any input you can give. Thanks in advance.

[GlutenFreeManna]

Welcome! Unfortunately the testing is not always accurate. There is a high rate of false negatives. Were you gluten free or even gluten lite when the test was done? If so, that will affect the results and make them more likely to be false negative. At this point you can either push to get a biopsy (and be sure to load up on gluten before the biopsy) or just try the diet and see if it relieves your symptoms. Many people here are self-diagnosed via diet response only. I discovered I had a problem with gluten when I was doing an elimination diet to see if I had food intolerances. I won't go back to eating gluten to have the tests now because it makes me too sick. The good news is that your doctor can still treat your hashimotos and test for other conditions if you decide to try gluten free for a while. Just be sure you get all the celiac-related testing you want done before trying the diet. Then do the diet trial just as strict as if you had been diagnosed.

[Skylark]

There are people who don't test positive for celiac but feel very sick from gluten. Have you tried the diet?

[etbtbfs]

Hello All~

This is my first post and I am looking for some input. I'll give a bit of background so you understand where I'm at.

For years I had suffered from what seemed to be random horrible stomach cramping and constipation. After my fourth pregnancy I started experiencing symptoms that were new and disturbing they are as follows: continued cramping and constipation with bouts of diarrhea, horrible anxiety and sometimes depression, irrational anger and irritability, chronic hives all over my body with lip swelling, heart palpitations, severe fatigue to where getting out of bed seemed impossible, dizziness or woozy feeling, occasionally feeling like my arms were really weak especially in the morning, and bad muscle pains in my back where sections would knot up like rocks.

I eventually got my thyroid checked and found that I have Hashimoto's. I did not want to go on thyroid meds for life and so decided to try alternative measures. I started working with a natural MD for adrenal fatigue who placed me on high, high potency supplements. This actually lowered my TSH to a normal level and although the thyroid antibodies were still present they were lower too. However, it has been a year of this and I still battle some fatigue, stomach bloating to where I look pregnant with very loud and uncomfortable gurgling in my right side after I eat, anxiety, and occasional hives. I know that if I were to come off my supplements I would go back to how I was. I felt like I was dying.

Now my son was just diagnosed with celiac by testing and biopsy and so was my mom. I had thought that I would turn up positive as my symptoms are present, I have 1st degree relatives and I already have another autoimmune disorder that is considered high risk for celiac. But my tests came back as follows:

tTg <3 (0-3)

Immunoglobulin A 177 (81-463)

Gliadin IgA 5 (0-19)

What would you make of this? What would you do? I hoped it would be an easy clear cut thing, because I just want to know what is wrong with me!

I so appreciate any input you can give. Thanks in advance.

Gluten is a classic trigger for Hashimoto's. You should also remember that, if those tests were done via blood sample, blood tests are not the most sensitive method of testing for gliadin sensitivity.

I think you should go on a gluten-free trial. In spite of what gluten proponents will say, going gluten-free is not THAT big a deal. Also, if your son is already gluten-free, it's that much easier for you to do it also.

I would suggest the following measures to prove whether or not gluten is your problem, and esp. if your Hashi's is caused by gluten:

1) Before you go gluten-free, consider a stool test from Enterolab.com, if you can afford $250. What's happening in the gut is a more sensitive test than bloodstream. By the time the problem spills into blood, it's more serious. Also the Enterolab test will tell you if you have dairy intolerance, which is often associated with gluten intolerance.

2) Before you go gluten-free, get your thyroid TPO and Thyroglobulin antibodies tested. Then go gluten-free and get antibodies measured again in 6-12 months. Are they going down? After I went gluten-free, my TPO antibodies started falling, going to zero in about 18 months.

[sb2178]

You could ask for another round of tests, especially if you weren't eating much gluten (3-4 slices bread/day), after eating more gluten, or a biopsy. If you don't need the paper saying you have it, try the diet.

Have your nutrient status assessed too. That may help.

[Marz]

In spite of what gluten proponents will say, going gluten-free is not THAT big a deal.

Hehe, I like that term - gluten proponents. It's like there's a gluten-promoting agenda out there

I agree with the above responses, only a gluten-free diet will really tell you for sure if gluten is the problem. But then you need to be as strict as if you were diagnosed with celiac disease. With your symptoms and family being diagnosed, it's only a matter of time before your tests do come back positive, but to quote Ravenwoodglass's doctor, that could be via autopsy not biopsy

[Arwen2k3]

Thank you all for your insights. I was eating gluten at the time of the tests so I know that was not the cause of the low lab values. I was just recently reading a blog by the glutendoctors that was very informative, discussing how currently there just is not any good testing for celiac. The sensitivity of the blood draws and even biopsy are just too low to be accurate all the time and many are missed. She mentioned that if someone has clear symptoms and is an at risk person with negative labs to trial a gluten free diet for 30 days and then a gluten challenge for two meals and monitor symptoms. She really stressed the importance of this because if you just trust the labs as negative, keep eating gluten even with symptoms, you'll kill yourself. That was pretty convicting. Is having an official diagnosis worth risking another autoimmune disorder or cancer? It is hard though going gluten free and saying "No, I don't have celiac. I have Hashi's. Gluten triggers my hashi's kind of like how it triggers celiac." People don't understand that well. But I am sure that is what is going on here.

So, I had previously been thinking of getting a second opinion at a nearby celiac clinic, but would that even be worth it? Can you see the benefit of doing that? Or just leave it alone and do the trial? Being new to this all I don't have the perspective on the pros and cons/foresight that some of you do.

Thanks for all your insight!

[ravenwoodglass]

Thank you all for your insights. I was eating gluten at the time of the tests so I know that was not the cause of the low lab values. I was just recently reading a blog by the glutendoctors that was very informative, discussing how currently there just is not any good testing for celiac. The sensitivity of the blood draws and even biopsy are just too low to be accurate all the time and many are missed. She mentioned that if someone has clear symptoms and is an at risk person with negative labs to trial a gluten free diet for 30 days and then a gluten challenge for two meals and monitor symptoms. She really stressed the importance of this because if you just trust the labs as negative, keep eating gluten even with symptoms, you'll kill yourself. That was pretty convicting. Is having an official diagnosis worth risking another autoimmune disorder or cancer? It is hard though going gluten free and saying "No, I don't have celiac. I have Hashi's. Gluten triggers my hashi's kind of like how it triggers celiac." People don't understand that well. But I am sure that is what is going on here.

So, I had previously been thinking of getting a second opinion at a nearby celiac clinic, but would that even be worth it? Can you see the benefit of doing that? Or just leave it alone and do the trial? Being new to this all I don't have the perspective on the pros and cons/foresight that some of you do.

Thanks for all your insight!

Do the trial but when you do the gluten challenge add it back in three times a day for a week. Sometimes our reactions are delayed. When you react stop the challenge and go back to being gluten free. Be super strict during the month off gluten going with whole unprocessed foods.

[Skylark]

Thank you all for your insights. I was eating gluten at the time of the tests so I know that was not the cause of the low lab values. I was just recently reading a blog by the glutendoctors that was very informative, discussing how currently there just is not any good testing for celiac. The sensitivity of the blood draws and even biopsy are just too low to be accurate all the time and many are missed. She mentioned that if someone has clear symptoms and is an at risk person with negative labs to trial a gluten free diet for 30 days and then a gluten challenge for two meals and monitor symptoms. She really stressed the importance of this because if you just trust the labs as negative, keep eating gluten even with symptoms, you'll kill yourself. That was pretty convicting. Is having an official diagnosis worth risking another autoimmune disorder or cancer? It is hard though going gluten free and saying "No, I don't have celiac. I have Hashi's. Gluten triggers my hashi's kind of like how it triggers celiac." People don't understand that well. But I am sure that is what is going on here.

So, I had previously been thinking of getting a second opinion at a nearby celiac clinic, but would that even be worth it? Can you see the benefit of doing that? Or just leave it alone and do the trial? Being new to this all I don't have the perspective on the pros and cons/foresight that some of you do.

Thanks for all your insight!

I assume gluten-free helps you feel better? You really haven't said one way or the other. It sounds like you got horribly sick in your first post, and if that was partly caused by gluten then you absolutely need to try the diet. If you feel a lot better, challenge cautiously as you may cause yourself a lot of problems.

We forget some of our lessons from kindergarten. Be nice. Share. If it makes you sick, don't eat it.