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? About Diagnosis

tired47

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tired47 Newbie
tired47
Posted

Hi All,

I am new here and have a few questions. I have nausea, malabsorption problems ( low iron, low calcium, low vitamin D, low magnesium, low potassium), diarrhea, weight loss of 35 lb. in one year, no appetite, chest pain, severe fatigue . The low mag has caused a cardiac arrythmia which I am now on verapamil for it. Have had blood test for celiac and crohns disease, negative. Had capsule endoscopy, flattened villa and multiple erosions on small bowel. GI dr. said it was not a GI issue. New Dr. is doing small bowel biospy this week. I have been on gluten free diet for 2 weeks... will that change biospy???? Also on diet I have had no improvement in symptoms. Does it just take time?? Anyone else have ideas? New Dr. ordered celiac gene testing as well as multiple tests for "fat absorption". He has promised he will send me elsewhere if he can not find an answer for me. Any help is GREATLY appreciated, I have been battling this for 14 months, praying for a diagnosis so I can fight this battle, hard to do when you have no idea what you are up against in battle. Interesting fact, my son was just diagnosed with crohns disease after 2 years. Thanks all for any help you can give me.

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nikky Contributor
nikky
Posted
I have been on gluten free diet for 2 weeks... will that change biospy???? Also on diet I have had no improvement in symptoms. Does it just take time?? Anyone else have ideas? New Dr. ordered celiac gene testing as well as multiple tests for "fat absorption". He has promised he will send me elsewhere if he can not find an answer for me. Any help is GREATLY appreciated, I have been battling this for 14 months, praying for a diagnosis so I can fight this battle, hard to do when you have no idea what you are up against in battle. Interesting fact, my son was just diagnosed with crohns disease after 2 years. Thanks all for any help you can give me.

welcome to the forum.

for the biopsy to be acurate you need to be eating gluten regularly, as for your symptoms not clearing up it does take time and theres the possibility of other intolerances. Its good that your doctor is taking the time to test you and is listening to what your saying. Good luck

lizard00 Enthusiast
lizard00
Posted

Hi there and welcome to the forum!

Good for you for finding a doctor who will keep looking. I'm not sure how the last one figures that flattened villi and erosions on your bowel is not a GI issue...

Ideally, you would want to be consuming gluten for the biopsy, because if you do have Celiac, you start to begin the healing process as soon as you remove gluten from your diet. However, it sounds like you have a good amount of damage to your intestine, so I would think that three weeks off the diet will not mess up your endo results. But at this point, consuming gluten is not going to change anything for you, especially if the endo is within the next few days.

Did you get the result of your blood test for Celiac? If you have not physically seen them, get your hands on a copy.

From your list of deficiencies and symptoms, it sounds like Celiac to me. Celiac has many, many symptoms, but the glaringly obvious one is the malabsorption.

Be patient with the diet. For some, results are almost immediate. For others, results take longer to see. Give the diet at least 2 or 3 months before you give up on it. It's almost like you have to detox and get all the gluten out of your body before things can begin to get back on track. As with anything, the more damage, the longer the recovery. So, hang in there. I know you have been struggling for a long time, but it sounds like you are close to an answer.

Please feel free to ask any question!!! Hope you get an answer soon!

Liz

Ursa Major Collaborator
Ursa Major
Posted

In reality, any doctor who knows anything about celiac disease will diagnose you with it if your villi are flattened. You may not see any improvement on the diet because in order to heal you also need to eliminate dairy and soy. False negatives on the blood tests are common and will absolutely not rule out celiac disease. Neither does a negative biopsy, by the way.

Low magnesium is obviously caused by malabsorption. To take medicine to cover up a symptom is insanity! Why doesn't your doctor give you magnesium shots instead, so your heart can work properly again? You are also probably low on vitamin D (common with celiac disease), which hinders the absorption of magnesium and calcium.

You need to be tested for the most common celiac disease deficiencies. These include vitamin D, calcium, magnesium, ferritin (iron), vitamin B12 and B6, vitamin K and potassium.

If you are deficient in vitamin D, DON'T take a prescription vitamin D, as these are usually vitamin D2, which is almost useless, as you need D3. The best way to get it is through lots of sunshine (which is hard in the winter), but in order to fix a deficiency, cod liver oil is the superior way to get it. Carlson's cod liver oil is the best, and doesn't taste bad.

Anemia can also cause heart arrhythmia, it did that to me. The reason is, that muscles need oxygen to function, and your heart is a muscle.

Low potassium can cause the same symptom.

By the way, Crohn's disease usually is helped a lot by a gluten-free diet.

tired47 Newbie
tired47
Posted
  • Author
In reality, any doctor who knows anything about celiac disease will diagnose you with it if your villi are flattened. You may not see any improvement on the diet because in order to heal you also need to eliminate dairy and soy. False negatives on the blood tests are common and will absolutely not rule out celiac disease. Neither does a negative biopsy, by the way.

Low magnesium is obviously caused by malabsorption. To take medicine to cover up a symptom is insanity! Why doesn't your doctor give you magnesium shots instead, so your heart can work properly again? You are also probably low on vitamin D (common with celiac disease), which hinders the absorption of magnesium and calcium.

You need to be tested for the most common celiac disease deficiencies. These include vitamin D, calcium, magnesium, ferritin (iron), vitamin B12 and B6, vitamin K and potassium.

If you are deficient in vitamin D, DON'T take a prescription vitamin D, as these are usually vitamin D2, which is almost useless, as you need D3. The best way to get it is through lots of sunshine (which is hard in the winter), but in order to fix a deficiency, cod liver oil is the superior way to get it. Carlson's cod liver oil is the best, and doesn't taste bad.

Anemia can also cause heart arrhythmia, it did that to me. The reason is, that muscles need oxygen to function, and your heart is a muscle.

Low potassium can cause the same symptom.

By the way, Crohn's disease usually is helped a lot by a gluten-free diet.

tired47 Newbie
tired47
Posted
  • Author

Thank you everyone for your advice, it helps so much to hear from others who have been there....

one of the replies mentioned vitamin D, I was deficient in that earlier in the year, take the D3 ... thanks and also have had low potassium and iron ( ferratin). Maybe there is hope on the horizon. I asked for shots of magnesium, but unless it gets lower they say no. Thanks again so much... I will continue the gluten free diet , I did not get this way over night so I guess it will take time. Besides I really want my son ( diagnosed with crohns) to participate in the diet too, but he says he is not willing to now ( he is young and doing well so far). But maybe in the future when he needs to I can lead by example and experience which will make this all worth it if I help him or anyone else who needs it.

:rolleyes:

tired47 Newbie
tired47
Posted
  • Author

Hi everyone! I had endoscopy/biopsy on Tuesday, awaiting results. Still no improvement in health, in fact worse but I am on levaquin for a bad sinus infection. My magnesium levels dropped to 1.9 ( they tested me after feeling terrible all week). And still no mag shots, won't do til they reach 1.6. My question to you all- who do you get to check for all deficiencies and who monitors your levels. The new GI dr. has done lots of blood work, waiting for results. I made an appt with the endocrinologist- but whose job is it to monitor my levels? I feel like a dog chasing his tails most days, other days very, very depressed which is NOT me!!! I need to know who to get to "take charge" of this mess- my primary care is just a family doctor not an internal medicine. Also has anyone used a nutritionist to test for food allergies and did you have good results? It was recomended by a compound pharmacist who seems very knowledgeable and helpful. And how do you get tested for parasites? My GI dr. is going to test for bacteria overgrowth once I am off antibiotic. Thanks for any help... it is so appreciated.

:rolleyes:

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nikky Contributor
nikky
Posted
Hi everyone! I had endoscopy/biopsy on Tuesday, awaiting results. Still no improvement in health, in fact worse but I am on levaquin for a bad sinus infection. My magnesium levels dropped to 1.9 ( they tested me after feeling terrible all week). And still no mag shots, won't do til they reach 1.6. My question to you all- who do you get to check for all deficiencies and who monitors your levels. The new GI dr. has done lots of blood work, waiting for results. I made an appt with the endocrinologist- but whose job is it to monitor my levels? I feel like a dog chasing his tails most days, other days very, very depressed which is NOT me!!! I need to know who to get to "take charge" of this mess- my primary care is just a family doctor not an internal medicine. Also has anyone used a nutritionist to test for food allergies and did you have good results? It was recomended by a compound pharmacist who seems very knowledgeable and helpful. And how do you get tested for parasites? My GI dr. is going to test for bacteria overgrowth once I am off antibiotic. Thanks for any help... it is so appreciated.

:rolleyes:

in the UK its our GIs or our GP(primary care doctors) job to monitor us for deficiencies and things like that, sorry to hear that you are going around in circles, i used to feel like that too, but it does get better, so keep your chin up and good luck.

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