Newly Diagnosed Help!

[Jen8584]

I am 36. In January I got Covid, wasn’t bad. In March I started having bad fatigue. In May I went to doctor and was told I was anemic. Started losing weight fast, stomach troubles, and fatigue was unbearable. Stopped working. By July I had lost 30 pounds, still iron deficient anemic. Then I found out I’m also b-12 and vitamin d deficient. 

I had a ct scan chest/ abdomen/ pelvis. Endoscopy and Colonoscopy. The endoscopyshowed Marsh 1 for possible celiac. My gastro ordered two tests to confirm celiac but they came back negative. He said it probably still is celiac and to start gluten-free diet. 

I was concerned I had cancer but this is the only thing that has shown up. Has anyone had similar experience? Is the fatigue that severe with celiac? I am getting b-12 injections and iron infusions. My hemoglobin is at a 13 but my ferritin is low normal at 21.

[trents]

8 minutes ago, Jen8584 said:

I am 36. In January I got Covid, wasn’t bad. In March I started having bad fatigue. In May I went to doctor and was told I was anemic. Started losing weight fast, stomach troubles, and fatigue was unbearable. Stopped working. By July I had lost 30 pounds, still iron deficient anemic. Then I found out I’m also b-12 and vitamin d deficient. 

I had a ct scan chest/ abdomen/ pelvis. Endoscopy and Colonoscopy. The endoscopyshowed Marsh 1 for possible celiac. My gastro ordered two tests to confirm celiac but they came back negative. He said it probably still is celiac and to start gluten-free diet. 

I was concerned I had cancer but this is the only thing that has shown up. Has anyone had similar experience? Is the fatigue that severe with celiac? I am getting b-12 injections and iron infusions. My hemoglobin is at a 13 but my ferritin is low normal at 21.

The anemia, vitamin deficiencies and weight loss you describe are all common to celiac disease. What two tests did the GI doc order that came back negative? Do you have the numbers and the reference ranges. Do you have online access to your medical records?

[Scott Adams]

What you describe are very common celiac disease symptoms, so I'm not surprised that your doctor suspects it. Even though your tests were negative, it is still possible that you have non-celiac gluten sensitivity, which ~12% of people have, but they can't test you for this yet.

If they don't plan to run more tests, then trying a gluten-free diet would be your next step to see if it relieves those symptoms.

[Jen8584]

1 hour ago, trents said:

The anemia, vitamin deficiencies and weight loss you describe are all common to celiac disease. What two tests did the GI doc order that came back negative? Do you have the numbers and the reference ranges. Do you have online access to your medical records?

TISSUE TRANSGLUTAMINASE AB, IGA  <1 and 

IMMUNOGLOBULIN A  147. The endoscopy showed Marsh 1 findings similar to those with celiac, h.pylori, or NSAID use. H.Pylori was negative as well as me not taking NSAIDS so Celiac was the only other possible reason. My hematologist also suspected celiac because of the all my vitamin deficiencies. I just thought it was strange to be hit so hard and fast from this. Fatigue being the first noticeable symptom. 

[trents]

30 minutes ago, Jen8584 said:

TISSUE TRANSGLUTAMINASE AB, IGA  <1 and 

IMMUNOGLOBULIN A  147. The endoscopy showed Marsh 1 findings similar to those with celiac, h.pylori, or NSAID use. H.Pylori was negative as well as me not taking NSAIDS so Celiac was the only other possible reason. My hematologist also suspected celiac because of the all my vitamin deficiencies. I just thought it was strange to be hit so hard and fast from this. Fatigue being the first noticeable symptom. 

The tTG-IGA test is the most common one run by physicians. It is considered to be the most specific test for celiac disease but it suffers from being less sensitive than some others that can be run and hence, it misses some who actually do have celiac disease. The Immunoglobulin A is done to measure total IGA. If total IGA is low then you can get false negatives for the individual IGA tests such as tTG-IGA. Do you happen to have the reference range for that one? Different labs use different reference ranges. 

[Jen8584]

22 minutes ago, trents said:

The tTG-IGA test is the most common one run by physicians. It is considered to be the most specific test for celiac disease but it suffers from being less sensitive than some others that can be run and hence, it misses some who actually do have celiac disease. The Immunoglobulin A is done to measure total IGA. If total IGA is low then you can get false negatives for the individual IGA tests such as tTG-IGA. Do you happen to have the reference range for that one? Different labs use different reference ranges. 

Oh okay. The reference range was 0-5 on that one.

[Wheatwacked]

7 hours ago, Jen8584 said:

endoscopyshowed Marsh 1 for possible celiac.

Before blood tests endoscopy was the Gold Standard.

[trents]

5 minutes ago, Wheatwacked said:

Before blood tests endoscopy was the Gold Standard.

The Endoscopy/biopsy still is the gold standard, though in Europe more and more celiac diagnoses are being made with the blood tests alone.

[Scott Adams]

Given your positive endoscopy, your symptoms, and the fact that your doctor thinks gluten is your issue, you may want to go gluten-free to see if it helps. It can't hurt.

[Jen8584]

37 minutes ago, Scott Adams said:

Given your positive endoscopy, your symptoms, and the fact that your doctor thinks gluten is your issue, you may want to go gluten-free to see if it helps. It can't hurt.

Yes I agree. I just never thought it could occur at my age and hit me so hard. The fatigue is the biggest complaint. I never feel unwell after I eat it’s just an all day thing. 

[Wheatwacked]

Keeping in mind that I take more than a dozen different vitamins each day and each vitamin has a different function, some overlapping, my perception is that vitamin D improved my attitude and gave me hope. Iodine improved my muscle tone, and vitamine B5 (pantothenic acid) plus choline improved my energy level. More research is indicating that D plasma levels of around 70 mg/ml has benificial effects on autoimune response and that many patients with autoimune diseases have insufficient to deficient vitamin D plasma. Geritol Multivitamin helped, but it has folic acid (increase risk of prostate cancer), synthetic vitamin E ("Every increase in vitamin E of 100 milligrams per day was associated with a 7 percent rise in lung cancer risk  https://www.medicinenet.com/script/main/art.asp?articlekey=87525)  and synthetic vitamin A (more recent studies show that high levels of these, in supplement form, may increase cases of gastrointestinal cancers   https://www.webmd.com/diet/cancer-guide). I get my E from 2 ounces of almonds, A from cod liver oil and folate from beans.

[Jen8584]

Okay. That sounds good. I currently get iron and b 12 infusions but still don’t have much energy. I’m not working so being home has not helped my lack of energy. I would like to go back to work but I want to make sure I am able to give my best.  It’s hard from having so much energy to barely being able to grocery shop. 

[Wheatwacked]

I grew up when old people took Geritol, so was only mildly surprised when I joined the "Geritol Generation" at how much it helped, but only took it for two bottles. Unfortunately most multivitamins have folic acid, E and A and only a small percentage of the RDA. Geritol Multi at least has 100% of most. You could try a bottle as proof of concept.

[Wheatwacked]

by the way, it's been around forever and I don't know of any lawsuits. Used to watch, with my grandmother, commercials for it on black and white TV on the Gary Moore show.

[Kate333]

Hi Jen.  Chronic, daily fatigue is a real bear, so I sympathize.  That's a constant struggle for me.  I was diagnosed in late 2019 and have been strictly gluten-free for 16 months now and I STILL have it.   But I also suffer from other health issues: depression, anxiety, insomnia, hypothyroid (low thyroid production), and I know that really bad fatigue (as well as GI issues) is also a classic symptom of those conditions, esp. if they are chronic or severe.   And in your case, getting Covid, living in a scary pandemic, getting diagnosed with celiac disease, AND being unemployed would trigger/intensify MH issues for even the strongest person!   Also, some people who get Covid have reported lingering, long-term effects, so it may be related to the fatigue issue.  If you haven't already done so, I hope you get a vaccine because "natural" immunity from having Covid wanes with the passage of time.   

If after a month or so on a strict gluten-free diet and taking the B12 shots, you still don't notice any improvement in symptoms, you might consider other possible explanations/treatments for the lingering fatigue, such as counseling or a low-dose anti-depressant.  

A note about the TTG test.  If you had the scope first, then cut back on gluten BEFORE you had the blood test, or you don't usually eat much bread, pasta or other gluten products as a routine, that could result in a false negative test and explain why it was in the normal range.   Once, after diagnosis with celiac disease, I got a TTG of  0.75.  I thought that was really super low, too inconsistent with the previous test results, so I got retested.  I was right, the lab had made an error.  So you might ask the doc for a repeat test.  Also, request a TSH (thyroid) blood test for your thyroid.  

Good luck on your healing journey!

[AlwaysLearning]

There was just an article in the news yesterday about how covid can change the way cells function. It could explain long covid or why some people develop diabetes after having covid ... because their pancreas is no longer producing as much insulin as they need.

I'm not saying that this seems like something you're dealing with, just sharing so that you add the clue as you try to solve your mysteries, especially if you never suffered fatigue before covid.

[knitty kitty]

Found these articles on what helps recovery from Covid....

"The prophylaxis and treatment potential of supplements for COVID-19"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7462519/

And...

"Be well: A potential role for vitamin B in COVID-19"

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7428453/

And...

https://www.hormonesmatter.com/recovering-from-long-covid-with-thiamine/

Hope this helps!

 

[Jen8584]

23 hours ago, Kate333 said:

Hi Jen.  Chronic, daily fatigue is a real bear, so I sympathize.  That's a constant struggle for me.  I was diagnosed in late 2019 and have been strictly gluten-free for 16 months now and I STILL have it.   But I also suffer from other health issues: depression, anxiety, insomnia, hypothyroid (low thyroid production), and I know that really bad fatigue (as well as GI issues) is also a classic symptom of those conditions, esp. if they are chronic or severe.   And in your case, getting Covid, living in a scary pandemic, getting diagnosed with celiac disease, AND being unemployed would trigger/intensify MH issues for even the strongest person!   Also, some people who get Covid have reported lingering, long-term effects, so it may be related to the fatigue issue.  If you haven't already done so, I hope you get a vaccine because "natural" immunity from having Covid wanes with the passage of time.   

If after a month or so on a strict gluten-free diet and taking the B12 shots, you still don't notice any improvement in symptoms, you might consider other possible explanations/treatments for the lingering fatigue, such as counseling or a low-dose anti-depressant.  

A note about the TTG test.  If you had the scope first, then cut back on gluten BEFORE you had the blood test, or you don't usually eat much bread, pasta or other gluten products as a routine, that could result in a false negative test and explain why it was in the normal range.   Once, after diagnosis with celiac disease, I got a TTG of  0.75.  I thought that was really super low, too inconsistent with the previous test results, so I got retested.  I was right, the lab had made an error.  So you might ask the doc for a repeat test.  Also, request a TSH (thyroid) blood test for your thyroid.  

Good luck on your healing journey!

Thank you! Yes I’ve been down for months after getting sick so I think I have a lot of depression going on now. I hadn’t been eating to much before test as I’ve been so anxious and scared. My doctor is also testing me for cooper deficiency because she said that could be low as well. I was so frightened I had cancer because the symptoms came out of nowhere. After all the test I suppose I have to trust that it’s not. I never had diarrhea that so many have with Celiac. 

[GodsGal]

1 hour ago, Jen8584 said:

Thank you! Yes I’ve been down for months after getting sick so I think I have a lot of depression going on now. I hadn’t been eating to much before test as I’ve been so anxious and scared. My doctor is also testing me for cooper deficiency because she said that could be low as well. I was so frightened I had cancer because the symptoms came out of nowhere. After all the test I suppose I have to trust that it’s not. I never had diarrhea that so many have with Celiac. 

Hi Jen, 

One thing that l have learned over the past 18 months is that celiac disease has many, many, many symptoms. So it can manifest itself in many ways. Some people with celiac have a lot of GI symptoms. Others may not have any. 

I had a really hard time emotionally with my diagnosis. I think that was largely because it was a total shock, and it felt like a big loss that I had to grieve.

You have had a lot of tough things in your life lately. Any one of those things (having had covid, losing your job, fearing cancer, sudden onset of celiac disease, etc) could cause a person to feel fatigue. 

It sounds like you have a good doctor. I am glad that they are checking into your vitamins and minerals. And other people have given you a lot of great advice. 😊

One other thing that has really helped me in my process is counseling and friendship with others who have celiac as well. Do you know other people in your area who have celiac? Are there any local support groups? 

Every type of healing is a process. And it takes time.

I hope this helps! Please keep us posted. 

[Sabaarya]

On 9/30/2021 at 1:36 PM, Jen8584 said:

I am 36. In January I got Covid, wasn’t bad. In March I started having bad fatigue. In May I went to doctor and was told I was anemic. Started losing weight fast, stomach troubles, and fatigue was unbearable. Stopped working. By July I had lost 30 pounds, still iron deficient anemic. Then I found out I’m also b-12 and vitamin d deficient. 

I had a ct scan chest/ abdomen/ pelvis. Endoscopy and Colonoscopy. The endoscopyshowed Marsh 1 for possible celiac. My gastro ordered two tests to confirm celiac but they came back negative. He said it probably still is celiac and to start gluten-free diet. 

I was concerned I had cancer but this is the only thing that has shown up. Has anyone had similar experience? Is the fatigue that severe with celiac? I am getting b-12 injections and iron infusions. My hemoglobin is at a 13 but my ferritin is low normal at 21.

Hi Jen.welcome to this site. Everyone here is very nice and helpful. The best place ever for celiac information. Had exactly the same situation except mine is Marsh 3a. Mild atrophy. Yours is extremely mild . My symptoms started after covid May 2020. Wish got it checked earlier. But I was thinking that anemia and vitamin deficiencies were related to Covid and stress. Was very fatigue,muscle pain,tingling in my hand,dull pain in the right side of my stomach. Had test for occult blood in my stool which was positive. Got really scared of cancer. Had endoscopy and colonoscopy.Negative blood test. Positive genetic panel. Hemoglobin 11.5,ferritin 3.9. B-12 was low,vitamin D low. Didn’t loose weight though. I was really anxious since my antibodies were normal and I was thinking about other scary posibilities. But I’ve also read that when the disease is mild it won’t show in your blood.My doctor said biopsy and genetic panel consistent with celiac disease. Strict gluten free diet. Just started to feel better after 6 weeks of diet. Taking B-complex Vitamin D and iron supplements Have you had genetic test?

[Jen8584]

Hey! No I haven’t had genetic testing. My doctor ordered more blood test for celiac that came back negative. She also ran two test for b12 deficiency that showed pernicious anemia. She said that she still believes I have celiac and to follow the gluten free.  

[Mary corey]

On 9/30/2021 at 4:36 PM, Jen8584 said:

I am 36. In January I got Covid, wasn’t bad. In March I started having bad fatigue. In May I went to doctor and was told I was anemic. Started losing weight fast, stomach troubles, and fatigue was unbearable. Stopped working. By July I had lost 30 pounds, still iron deficient anemic. Then I found out I’m also b-12 and vitamin d deficient. 

I had a ct scan chest/ abdomen/ pelvis. Endoscopy and Colonoscopy. The endoscopyshowed Marsh 1 for possible celiac. My gastro ordered two tests to confirm celiac but they came back negative. He said it probably still is celiac and to start gluten-free diet. 

I was concerned I had cancer but this is the only thing that has shown up. Has anyone had similar experience? Is the fatigue that severe with celiac? I am getting b-12 injections and iron infusions. My hemoglobin is at a 13 but my ferritin is low normal at 21.

I had extreme fatigue, low b12 & vit d ... dizziness, brain fog. Etc.