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Gastrointestinal symptoms getting worse after going gluten free

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Hello, hope to find some help here, because my doctors are quite unsure.

I had nerve pain in my ulnar nerve (elbow, pinky finger) for about 7 years with an escalation about 2 years ago (28 yo btw). Eating a lot of pizza and beer, combined with stress of a long period of time, my nerve pain got worse to the point I could not use my hands any longer. There were some ups and downs but quickly other symptoms appeared, like muscle aches, cold hands, joint pain, dry eye, finger pain on the other fingers and increased sensitivity in general.

After seeings tons of doctors, one found in Nov, 2016 increased ttG-AK, AGA and thyroglobulin antibodies as well as slightly increased free t4 with TSH and T3 being normal. I have always been low on Vitamin D, Selen, Q10 and had bad cholesterol and increased CK from time to time - which all relate to eighter celiac disease or hashimoto. Iodine is also low, but was measured only recently.

He told me to go gluten free and both conditions - the celiac disease and hashimoto - will improve quickly. The diagnosis was clear for him, even without a colonoscopy.

Most pain improved quickly and overall I felt better, however I got new symptoms: iron deficiency, cold hands all day and bowel sounds with bowel pain. My bowel movements became much more voluminous (!) than ever before and I've lost 15 Kg within 2 months (85 Kg vs 70 Kg now). I started eating huge amounts, but my small intestines seems not to be able to handle it.

I had never noticeable bowel problems (or weight loss/gains before) - only after eating special foods (like pizza), but I never recognized it a problematic. I did not lose or gain weight.

But after going gluten free, my intestines seem to be on a war. It should be the opposite, shouldn't it?

(I'm strictly gluten free, read a lot of articles and books and I always had a very healthy lifestyle concerning food - except a few phases like the one mentioned above - ... mostly organic, lots of fruits and vegetables)

Thanks for your help! 

Edited by Allgood

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Hi Allgood,

It can take a year to a year and half to heal your gut, or more.  Even a tiny amount of gluten can cause the immune reaction to keep going.  So it's real important to be sure you aren't getting any cross contamination of gluten in your food.  The best way to start the gluten-free diet IMHO is to avoid all processed foods, don't eat in restaurant, and eat only whole foods like meats, nuts, veggies, eggs, and maybe a little fruit.  Avoid carbs (starchy foods) and sugar also.  Dairy is often a problem for people at first too.

It takes time to get better, but eating a clean, whole foods diet is the fastest way to get better.

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Thank you GFinDC, but I's absolutely contrary to develop gastrointestinal symptoms and deficiencies just AFTER going gluten free. This is what really bugs my mind. Iron for example. I have dozens of iron results over the last 2 years and it was always ok. 3 weeks gluten-free and no more iron? Weight loss? I can't get why symptoms exaggerate. It seems like my Small intestine stops working more and more...

Thanks for the tips, but I decided to eat mostly "paleo" some weeks ago, so I'm already on a good diet.

I would really like any kind of explanation, maybe the thyroid is going nuts? Or the small intestine can't handle these loads of nutrition? Should I stop taking Vitamins, Iron, Spriulina pilla, ... because it may be too much to handle?

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It's common to get worse when becoming gluten free. It's going to take a while. Your body healing will deplete your stored nutrients. I got really sick when I first tried to be Gluten-Free, and I've gone through stages of sick and not so sick without breaking my diet. Itll likely just keep happening until the healing is done. It could also be your own stress at times because it is a big change and just being aware of your overall health brings up the reminder that celiac is something to deal with in many areas of life. Drinking water helps me a lot. How's your fiber intake? Balanced from both fibre types and meeting your daily needs? Paleo diet is tricky at times and not always the best route when healing is trying to take place. Also you could benefit from eggs for your nerves, it helps me to eat 3 a day.

I've been Gluten-Free for about 10 full months and my intestinal issues are not gone. Also some foods are inflammatory on their own and I know too much of them makes me a little sick.

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Hi Allgood,

Have you ever scraped your knee?  The skin probably formed a scab as it was starting to heal.  Even with that scab though, I bet it hurt every time you touched it or rubbed it for a while.

You gut is actually skin-like cells, and is considered specialized skin cells.  That doesn't mean you'll get  a scab in your gut, but that it will go through a healing process.  While it is going through that healing, it is also still being attacked by the immune system.  Otherwise known as "picking at the scab".  The gut tries to rebuild it's villi lining and the immune system tears it right back down.  The immune reaction should taper off but it may take a month or several for that to happen.  The surface area of the small intestine is about the size of a tennis court, so we are talking about of lot of area to heal.

The other thing that is probably all wrong is your gut bacterial flora is possibly slightly FUBAR.  Well, not really, but it is probably somewhat out of whack from all the gut damage and poor digestion.  Your healing gut will have increased surface area as the newly repaired villi provide more surface area.  The bacteria will  have new homes (more surface area) and multiply.  So things can be unsettled for that reason too.  Bacteria are good though, they help us digest foods and are even involved in some vitamin production.   Villi lining the small intestine are good too because they produce enzymes that also help digest and absorb foods.

Changing your diet changes the gut bacteria also, but a paleo diet is a good choice.  It may take a while for things in bacteria land to settle down though.

Healing is a process, and it takes time.  Sometimes a lot more time than we would like.

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Thank you Taras Light, will follow your tips. I assume you had intestinal issues before your diagnosis? Well I did not (except very few which I only noticed afterwards), I always said I can eat anything and had no noticeable symptoms. It just bugs me, that it's getting that worse after going gluten-free. Guess my intake is very balanced overall, not much room for improvements. I'm not an extreme paleo though. Will also try your egg tip!

Thanks GFinDC, I like your metaphor. Guess you're write and everything - likely the bacteria - is going nuts screaming "where is my gluten?" ;-) I took 14 days of probiotics though. I thought they would help but after finishing the intake, things got worse ...

It might be correlating to increasing my T4 pill so 25µg per day ... any experience?

Moreover I feel very bad after exercising (heavy muscle aching/pain, nerv pain coming back for some days). Even after mild yoga. Might be the thyroid going nuts? Any experience with this?

I really appreciate your answers and would like to thank you to building and maintaining such a great platform!

edit: just got a new blood test result and I'm quite depressed. Parietal cell antibodies positive, which explains iron deficiency. So that's three autoimmune issues... Thyroid antibodies also increased. ttG is lower though, guess that's the bright side :-/

Edited by Allgood

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Hi Allgood,

This Mayo Clinic link suggests the PCAB test being positive could be related to pernicious anemia, a vitamin B-12 problem.  That might be something to look into?  I am not sure that is the same test you had of course.  But quite a few celiacs are low on B-112 when starting the gluten-free diet it seems.  Iron is usually not a problem for men, but rather too much iron can be a problem for them.

Also, some probiotics were found to contain gluten in small amounts a while back.  I don't have a list of the bad ones, or know if they are still bad for that matter.  But it might be an angle to investigate.

Ahh, Scott (celiac.com owner) is the founder of celiac.com and head guru.  Yeah, he did real good getting it going!  Thanks Scott! :)

There is no way to know for sure, but some people have reported their Hashimoto's and other AI condition symptoms reduced after going gluten-free.  So maybe you'll find some relief also.

I have had some symptoms of sore joints/muscles that I think are thyroid related.  But my doctor always says my thyroid levels are fine.  So I take a thyroid supplement because I feel better on it.



PCAB Parietal cell antibodies test

Evaluating patients suspected of having pernicious anemia or immune-mediated deficiency of vitamin B12 with or without megaloblastic anemia



What Are the Signs and Symptoms of Pernicious Anemia?

A lack of vitamin B12 (vitamin B12 deficiency) causes the signs and symptoms of pernicious anemia. Without enough vitamin B12, your body can't make enough healthy red blood cells, which causes anemia.

Some of the signs and symptoms of pernicious anemia apply to all types of anemia. Other signs and symptoms are specific to a lack of vitamin B12.

Signs and Symptoms of Anemia

The most common symptom of all types of anemia is fatigue (tiredness). Fatigue occurs because your body doesn’t have enough red blood cells to carry oxygen to its various parts.

A low red blood cell count also can cause shortness of breath, dizziness, headache, coldness in your hands and feet, pale or yellowish skin, and chest pain.

A lack of red blood cells also means that your heart has to work harder to move oxygen-rich blood through your body. This can lead to irregular heartbeats called arrhythmias (ah-RITH-me-ahs), heart murmur, an enlarged heart, or even heart failure.

Signs and Symptoms of Vitamin B12 Deficiency

Vitamin B12 deficiency may lead to nerve damage. This can cause tingling and numbness in your hands and feet, muscle weakness, and loss of reflexes. You also may feel unsteady, lose your balance, and have trouble walking. Vitamin B12 deficiency can cause weakened bones and may lead to hip fractures.

Severe vitamin B12 deficiency can cause neurological problems, such as confusion, dementia, depression, and memory loss.

Other symptoms of vitamin B12 deficiency involve the digestive tract. These symptoms include nausea (feeling sick to your stomach) and vomiting, heartburn, abdominal bloating and gas, constipation or diarrhea, loss of appetite, and weight loss. An enlarged liver is another symptom.

A smooth, thick, red tongue also is a sign of vitamin B12 deficiency and pernicious anemia.

Infants who have vitamin B12 deficiency may have poor reflexes or unusual movements, such as face tremors. They may have trouble feeding due to tongue and throat problems. They also may be irritable. If vitamin B12 deficiency isn't treated, these infants may have permanent growth problems.

Edited by GFinDC

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