Can't stop crying!

[Julie Fairchild]

I have not been diagnosed yet! Just had blood draw yesterday..I'm 51 years old and my whole life I've been ill. After watching Doc Martin, on PBS, an American went to Cornwall to find out about their heritage and why they were feeling unwell they thought they may have celtic disease! After reading symptoms it fits like a glove...growing up I would get introuble for not eating everything on my plate so of course I would. I remember going to a restaurant with my family my dad ordered liver and onions I think I was 4 years old any way when I smelled the liver i was like a bobcat on a jack rabbit i grabbed a handful off my dads plate and shoved it in my mouth and then begged for more! Iron deficiency? I suffered with strep throat tonsillitis ear infections sinus infections mouth sores cracked tongue would also sleep any chance i got, in fact thats all I could focus on was when can I go lay down I was so tired all the time. I've had every test under the sun except celiac test. Even skin biopsy of the rash, with no results...then I found blood type diets. I'm O- so I cut out all yeast and night shades and did a little better but did not end my suffering. I was told I had IBS,diverticulitis, colitis, leaky gut, polyps, you name i had it! For the past 30+ plus years I've been chasing my ailments to no avail..oh let's not forget the doc's saying its in my head and prescribing antidepressant meds which made me psychotic and even more lethargic. I feel like I was robbed of my life..I have no friends due to no energy or constant diarrhea, my family thinks I'm just lazy, I've been hospitalized for heart conditions with no diagnosis I have constant ringing in my ears but there's nothing wrong with my ears numbness and tingling all over my body including my lips severe headaches severe exhaustion constantly hungry rashes behind my ears nausea vomiting fainting mini seizures I have muscle spasms joint pain  trembling blurred vision can't think loss of words. I'm just miserable. I lost my job of 17 years due to extreme fatigue and back pain numbness in extremities. The neurologist couldn't find any underlying reason why I had back pain numbness and tingling so they said it was because of stress of my job. I disagreed but still lost my job with 3 years left to retirement. Now I'm hand to mouth when I can find work that can accommodate my symptoms which are few. I hope and pray this is what I have so I can fix it..other wise I'm done fighting. Thanks for letting me vent! 

                  God bless you all.

[trents]

Welcome to the forum, Julie. You are the same age as I was when I was diagnosed about 20 years ago. But it took many years to get the diagnosis from the time there was evidence of having celiac disease. Par for the course, I'm afraid. When you get the results from the blood test, please consider posting the numbers, including the ranges used by the lab for negative vs. positive since there is no industry standard for this. I hope your physician ordered a full celiac antibody test instead of just the tTG-IGA.

[Julie Fairchild]

1 hour ago, trents said:

Welcome to the forum, Julie. You are the same age as I was when I was diagnosed about 20 years ago. But it took many years to get the diagnosis from the time there was evidence of having celiac disease. Par for the course, I'm afraid. When you get the results from the blood test, please consider posting the numbers, including the ranges used by the lab for negative vs. positive since there is no industry standard for this. I hope your physician ordered a full celiac antibody test instead of just the tTG-IGA.

Definatley will do! Anything that would help others not to suffer.

[Scott Adams]

Hang in there! I'm not sure where you are in the diagnosis process, but be sure to keep eating gluten daily until all celiac disease testing is finished, otherwise you may end up with false-negative results. You also could have non-celiac gluten sensitivity, and unfortunately there are no tests yet for this.

The good news is that after your tests you can go gluten-free and will hopefully see some big, positive changes in your symptoms.

[Julie Fairchild]

On 10/25/2022 at 12:31 PM, trents said:

Welcome to the forum, Julie. You are the same age as I was when I was diagnosed about 20 years ago. But it took many years to get the diagnosis from the time there was evidence of having celiac disease. Par for the course, I'm afraid. When you get the results from the blood test, please consider posting the numbers, including the ranges used by the lab for negative vs. positive since there is no industry standard for this. I hope your physician ordered a full celiac antibody test instead of just the tTG-IGA.

Sorry so late my blood work came back normal. 

[Scott Adams]

So there is a condition called non-celiac gluten sensitivity, which ~10x more people have than celiac disease, and unfortunately there isn't a test for it. You may want to try a gluten-free diet for a couple of months to see if it helps with your symptoms.

[knitty kitty]

@Julie Fairchild,

Your journey to diagnosis sounds a lot like mine!  I dove into liver, too!  😺 Years of misdiagnosis!  I sympathize completely.

Anemia and Diabetes can cause false negatives on blood tests for Celiac, and I had both.  My blood tests were negative, too, so I opted for genetic testing.  With two positive genes for Celiac, and an arm's length list of symptoms, I got my diagnosis. 

I followed the Autoimmune Protocol Diet and soon felt better.  Vitamin and mineral supplements helped me recover from nutritional deficiencies caused by malabsorption due to Celiac Disease.  High dose Thiamine helped me with the neurological problems.  

Best wishes!

[Julie Fairchild]

5 hours ago, knitty kitty said:

@Julie Fairchild,

Your journey to diagnosis sounds a lot like mine!  I dove into liver, too!  😺 Years of misdiagnosis!  I sympathize completely.

Anemia and Diabetes can cause false negatives on blood tests for Celiac, and I had both.  My blood tests were negative, too, so I opted for genetic testing.  With two positive genes for Celiac, and an arm's length list of symptoms, I got my diagnosis. 

I followed the Autoimmune Protocol Diet and soon felt better.  Vitamin and mineral supplements helped me recover from nutritional deficiencies caused by malabsorption due to Celiac Disease.  High dose Thiamine helped me with the neurological problems.  

Best wishes!

Thank you I feel like I'm finally on the right track!

[Julie Fairchild]

21 hours ago, Scott Adams said:

So there is a condition called non-celiac gluten sensitivity, which ~10x more people have than celiac disease, and unfortunately there isn't a test for it. You may want to try a gluten-free diet for a couple of months to see if it helps with your symptoms.

Hi thank you for all your comments and advice its greatly appreciated! I have horrible muscle spasms and cramps my brother gave me L Glutamine to help me. Turns out it has wheat ingredients, I became very sick to my stomach and my joints locked up....I believe I'm on the right track as far a gluten intolerance. Thanks again.

               God Bless.

[knitty kitty]

@Julie Fairchild,

I hate those horrible muscle cramps and spasms!  

I tried L - Glutamine and had a horrible reaction, too.  

I found that taking magnesium citrate and thiamine Vitamin B1 has helped get rid of them.  

In the morning and at midday, I take Thiamine in the form Benfotiamine (because this form helps heal the gastrointestinal tract) and magnesium near bedtime and no more cramps.  

I hope you feel better!

[Sabaarya]

On 12/9/2022 at 12:03 PM, Julie Fairchild said:

Sorry so late my blood work came back normal. 

Hi Julie. I had normal celiac panel results but positive biopsy from my duodenum and positive genetic test was consistent with celiac disease…

[trents]

7 hours ago, Sabaarya said:

Hi Julie. I had normal celiac panel results but positive biopsy from my duodenum and positive genetic test was consistent with celiac disease…

@Sabaarya, just curious. What tests were included in your celiac panel?

[Sabaarya]

1 hour ago, trents said:

@Sabaarya, just curious. What tests were included in your celiac panel?

I’m not quite sure,but doctor said that it was full panel and he was surprised that I had negative test results,because before test I already had endoscopy and it was positive for celiac and he just wanted to make sure. Since the blood work was negative he ordered genetic test and it came back positive. My biopsy showed Marsh 3A score which is mild atrophy of villi. I was having bunch of symptoms,almost all of your symptoms. I’m  having repeat endoscopy after 16 months on gluten-free diet next week and very anxious

saba

[trents]

1 hour ago, Sabaarya said:

I’m not quite sure,but doctor said that it was full panel and he was surprised that I had negative test results,because before test I already had endoscopy and it was positive for celiac and he just wanted to make sure. Since the blood work was negative he ordered genetic test and it came back positive. My biopsy showed Marsh 3A score which is mild atrophy of villi. I was having bunch of symptoms,almost all of your symptoms. I’m  having repeat endoscopy after 16 months on gluten-free diet next week and very anxious

saba

@Sabaarya, this is valuable information. Thanks for sharing. We have had scattered reports here and there of people having negative antibody results but positive biopsy. Any chance you could get a hold of the information about the specific antibody tests that were run so we have more detail? This is a valuable post which would be even more peruasive if we had more detail. I'd like to link this thread for evidence when this anomaly comes up again. Do you have DH by any chance?

[Sabaarya]

53 minutes ago, trents said:

@Sabaarya, this is valuable information. Thanks for sharing. We have had scattered reports here and there of people having negative antibody results but positive biopsy. Any chance you could get a hold of the information about the specific antibody tests that were run so we have more detail? This is a valuable post which would be even more peruasive if we had more detail. I'd like to link this thread for evidence when this anomaly comes up again. Do you have DH by any chance?

Hi. No, I don’t have DH. 

Just now, Sabaarya said:

Hi. No, I don’t have DH. 

These are my test results…

[trents]

So it looks like only two tests were run: tTG-IGA and total IGA. That is far from a "celiac panel". I'm wondering if more tests were run if there would have been some positives. Here is a primer for tests that can be run: https://celiac.org/about-celiac-disease/screening-and-diagnosis/screening/

We do know that the tTG-IGA is the most popular antibody test run by physicians but we also know it misses about 20% of those who actually do have celiac disease as confirmed by biopsy and if you are of black African decent it will miss 80%.

[Sabaarya]

So it’s not full celiac panel?

[trents]

4 minutes ago, Sabaarya said:

So it’s not full celiac panel?

No, it is not.