Celiac, anxeity or something else?

[Ivana]

Hello, 

I have been diagosed a month ago and have been reading this forum ever since. I am impressed with the members' knowledge about the disease and their willingess to share it and their experience. I am hoping I could also get some valuable imput myself. 

My story: I was diagnosed at almost 40. I have always considered myself very healthy, except for recurrent anemia, which was never looked into, perhaps because I felt fine overall (did long distance running and such). This year has been very stressfull for me for various reasons and in March I developed a mild gastritis and some kind of tension under the right rib. Both aches would not be there when I was busy with something and didn't think about it, so I assigned it to stress. This lasted throughout the lockdown months. However, being a very anxious person, I dr. googled, and got scared of the anemia+gastritis combination, so I went to a gastrologist. He found pylori bacteria and marsh 3c celiac with a biopsy. I have completed an antibiotics treatment for the bacteria since. 

I am a very sensitive person, and after a few months of stresses related to different areas of life, I took the diagnosis rather dramatically. The more I read about it, the more I was afraid. I started gluten-free diet right away, as much as my knowledge permited, of course. In the past month I have become a whole new level of anxious and I feel like it all escalated. Besides the horrible mental state, I have developed physical symptoms that I never had before: My back, chest and stomach muscles became tense (the tense feeling moves around these areas), then the same feeling appeared in my legs too. I also experience pins and needles and muscle twitches. And now at night my back is slightly cramping, which is causing me serious insomnia. I mentioned these problems to my gp and gastro, but they didn't seem concerned about it, and are focusing on the tests I should do post diagnosis.

But these symptoms are a source of great stress and confusion for me. They do correspond to anxiety. My plan was to go back to my GP and ask for blood tests, chest x ray, etc. to rule out other conditions, and hopefully "leave" it at anxiety to give me some peace of mind which would maybe help relieve it. But I have also found on this forum that people experience similar due to celiac or some other related condition. If so, I should be looking to resolve them with gluten-free food and possibly other food avoidance? Since I never had the classical symptoms and digestion problems, I don't even know whether my diet at the moment is really gluten-free and if I have other fool intolerances that also potentially hurt my system, which is another problem.

As for celiac disease, my gastro only ordered iga, ttg (to check my starting levels), vitamin d, calcium, b12 and folic acid. Everything but ttg is within range, but ttg is 900. :(((( This of course upset me further (when I see the numbers of other people), and made me think that I suffer from these symptoms now because of celiac disease. It is just that the timing is so strange, that I developed all this just after the diagnosis. But I need to relieve them somehow, or I will not get sleep anytime soon.

I know I can't really expect answers to these questions, but perhaps someone went through something similar? 

Ps. I learned on this forum that I need to do many other post diagnosis tests (thyroid, other vitamins, etc.), but I am from Croatia and these things go a bit slower. I will insist with my GP to make referrals asap though. I had a complete blood test in April, and everything was normal, except for all things related to iron, as usual... 

Thank you for reading. I needed to put it all down like this because I feel very helpless and frustrated, what with the system and lack of understanding for the disease among doctors, me not living in the same place as my GP, waiting time for referrals, everything on hold due to vacations and corona, and my persistent fears.

Ivana

[trents]

Welcome, Ivana!

You seem to have done a good job of sorting through the possibilities so I don't have much advice to offer except to continue educating yourself as to how gluten is hidden in foods, meds and supplements and how it is disguised with terminology . . . how it's not always what the food manufacturers disclose but what they don't disclose. Personally, I only recently learned that here in the U.S. food labeled "Gluten Free" is not the same as "Certified Gluten Free," the latter being subject to more stringent testing. I would suggest sticking to food that is simple and basic rather than prepackaged . . . fresh meat, vegetables, potatoes, fresh fruit.

[ravenwoodglass]

Welcome to the board. The best advice I can give you is to eat as much whole unprocessed food as possible. Meats, fish, veggies, fruit etc. It can take some time to get used to cooking everything yourself but that is safest. If you live with others who eat gluten you need to be careful of cross contamination. For example don't use the same strainer that was used for pasta for gluten free pastas and you will need your own toaster that has never had wheat bread in it. If you grill outside put your food on foil so someones grilled gluten food doesn't contact your stuff. If you have a significant other who eats gluten make sure they brush their teeth before you kiss.

Your anxiety could also be due to all the stress you are under. With the world in turmoil because of the virus and your recent diagnosis that could factor in. Your doctor may be able to prescribe a mild anti-anxiety drug short term to help. You mention tingling that could be caused by low B12. Was that checked by your doctor? The levels should be over 250. You might find a sublingual (dissolves under the tongue) B12 tablet to be helpful. If you get the tablets don't be alarmed by the high dosage. Your body will excrete any it can't use. A good multi is also helpful of course.

You should check the Newbie 101 thread at the top of the coping section for more good info.

[cyclinglady]

Oh, honey!  Let me give you a virtual hug!  I am a mom who has celiac disease and I can assure you that you can get well.  With time, the anxiety you are experiencing will dissipate.  Be patient.  Again, it takes time.  Why is everything falling apart when you just had anemia (like me)?  It is because your body and mind can not longer go forward.  Both are tired of trying to compensate with the secret malnutrition you have been dealing with,  not to mention other systemic issues  that I bet you never really noticed.  

Please heed the advice of our long-time members.  They have walked in your shoes.  First, focus on the gluten free diet.  Look for nutritionally-dense, real food.  Allow yourself to rest and let others help you.  This is not the time to be superwoman!  Keep a food journal.  Know that lactose intolerance, which is common, might be an issue for you or not.  But not every celiac has additional intolerances.  Avoid oats for now and do not eat out until you feel better.
 

I think your doctors are doing a fine job.  They are sensibly trying to fix one thing at a time.  Since celiac disease can cause so much damage, it is prudent to start your healing by treating your celiac disease before jumping to an additional diagnosis that might resolve on the gluten-free diet.  
 

All those pins and needles, chest pressure, are most likely do to anxiety, especially since many of your tests have been in the normal range.  But even if you are deficient in something other than iron, know that you can get this resolved soon.  Heal your gut so that you can absorb your nutrients.  I took only iron when I was diagnosed and just for three months. Then my ferritin rose significantly.  I was not deficient in other vitamins, but that was just me.  
 

Your best defense is to research the diet.  You will get better.  Now do some visualization, bio-feedback or take a easy run outdoors and get some sunshine.  Relax and breathe.  
 

Hugs!  

[Ivana]

Dear trents, ravenwoodglass and cyclinglady,

thank you so much for taking your time to write me a response. Just getting some encouragement and advice made me feel a bit better and I even slept somewhat decent already. 

Upon research, I am actually starting to think that my anxiety symptoms have to do with thyroid, so I will check it. (Another shock!)

Can I please ask two more things: How do I know if I am lactose or something else intolerant, if I don't have symptoms? I see there are these alergy tests that test on a hundred or so ingredients, but have read that they might not be accurate. 

Also, I am very worried about the super high level of antibodies. Could it mean that other things are going on too that I should check? I see some people take out tumor markers. Noone recommended it to me, so I don't know it that should be done?

Thank you again!

[DJFL77I]

I have mild gastritis too when I was diagnosed with celiac...

I also have the muscle twitches you mentioned....  mildly..  in my calves area usually.. 

[trents]

3 hours ago, Ivana said:

Dear trents, ravenwoodglass and cyclinglady,

thank you so much for taking your time to write me a response. Just getting some encouragement and advice made me feel a bit better and I even slept somewhat decent already. 

Upon research, I am actually starting to think that my anxiety symptoms have to do with thyroid, so I will check it. (Another shock!)

Can I please ask two more things: How do I know if I am lactose or something else intolerant, if I don't have symptoms? I see there are these alergy tests that test on a hundred or so ingredients, but have read that they might not be accurate. 

Also, I am very worried about the super high level of antibodies. Could it mean that other things are going on too that I should check? I see some people take out tumor markers. Noone recommended it to me, so I don't know it that should be done?

Thank you again!

Ivana, there are many on this forum who are more knowledgeable about serum tests for Celiac than I am so I will let others address that issue. I do know that some of the serum tests are pretty specific for Celiac antibodies while others do not eliminate the possibility of other autoimmune conditions. The science of this has improved since the almost 20 years ago when I was diagnosed. 

As has already been stated, Celiacs commonly develop allergies and intolerance to other foods that don't contain gluten. Dairy and soy are chief among them. As the gut heals some of these intolerance problems may lessen or disappear. Allergies tend to stay with us as that is something programmed into the immune system. Personally, I find I have thresholds for some of these allergies where I can eat limited amounts of the offending substance and not too often and be fine. Too much too often and I get ill. I think my issues with migraines are like that and I suspect it revolves around peanuts and some tree nuts.

Allergy testing per se is often not very helpful because of a number of factors such as lack of good correlation between testing results and symptoms and inconsistencies in the testing methods themselves. I've had both the skin prick kind of allergy testing and the serum testing and they didn't agree well with one another. And you can send the same blood sample to two different labs and get vastly different results. Having said that, allergy testing can help identify potential real allergens, especially if you have the testing done in multiple ways and/or by different labs. Look for areas of significant agreement between the tests. It's a place to start, perhaps when looking for offending substances. The problem I ran into with it was that testing identified so many food allergens that it would have been impossible to eliminate all of them. I mean you have to eat something to stay alive.

If you feel you may have an intolerance or allergy to dairy the only reliable test would be elimination of dairy from the diet for a period of time to see if symptoms disappear.

Sounds like you could be onto something in making the connection between your anxiety problems and thyroid issues. Some thyroid diseases are autoimmune in nature and we do know that it is common for celiacs to develop other autoimmune diseases. There is significant overlap in the genes involved with celiac disease and some other autoimmune conditions.

[ravenwoodglass]

4 hours ago, Ivana said:

Can I please ask two more things: How do I know if I am lactose or something else intolerant, if I don't have symptoms? I see there are these alergy tests that test on a hundred or so ingredients, but have read that they might not be accurate. 

Also, I am very worried about the super high level of antibodies.

IMHO the best way to test for other intolerances it to eliminate the item you think you may be reacting to for a couple weeks and then add it back in daily for a week and see if you react. Some allergists will guide you on an elimination diet for other intolerances but they can be hard to find. If you don't have symptoms then I think you likely don't need to worry about other intolerances.  Other intolerances, as far as I understand, will not raise celiac antibodies. True allergies cause a different immune reaction. If you are consuming something that causes mouth tingling, swelling in your mouth or throat, or a rash do get to your doctor ASAP but it doesn't sound like that is happening.

As to your very high level of antibodies that is not unusal. They should go down after some time on the diet. You can have your doctor recheck them in a few months after you have been strictly gluten free.

 

[cyclinglady]

Lactose intolerance causes significant abdominal pain, but no damage to the body. It is common in a huge percentage of the world’s population.  If you can consume yogurt, milk, cheese, without any abdominal pain, then go ahead and eat dairy.  

https://en.wikipedia.org/wiki/Lactose_intolerance

I would not worry about very high antibodies either.  I had elevated celiac antibodies when my gut had healed.  Go figure!  The antibodies test is just a tool.  It is not perfect.  The proof was in your intestinal biopsies.  Now, move on and master the diet.  Soon you will feel so much better!  

[Kate333]

Hi Ivana.

If it's any comfort, you aren't alone in your reaction to the diagnosis and struggle to adjust to gluten-free diet, esp.  during a global pandemic.   The upside for you is overall good heath (very active, fairly young distance runner).  

Take heart about your blood test numbers.  They should dramatically decline once you adopt and stay on a gluten-free diet.  As others here have said, it's very important to avoid CC (cross-contamination).   My numbers dropped by at least 100 points with each subsequent ttg blood test. 

It sounds like your physical symptoms may be more anxiety than anything else.  I also am a HSP, and I have noticed all the symptoms you describe.  For my wellbeing, I find it crucial to avoid "Dr. Google" and TV news.  I try to meditate (there are many free YouTube options), listen to relaxing music, and spend as much time outdoors as possible every day .  

IMO Trents gluten-free diet advice is the best:  eat ONLY fresh food (meats, fruits, veggies) and avoid packaged/processed foods altogether.  I did so to avoid even a remote possibility of buying food CC with G.  But I also knew that, for me, having to constantly read labels and worry about accuracy of gluten-free food manuf. claims would only fuel stress, so I took the much simpler path and eat 100% "natural".  Also, foods here in the USA labeled gluten-free are much more expensive and tend to be loaded with other unhealthy ingredients like sugar, additives.  

 

 

[Ivana]

Thank you everyone, I appreciate all your suggestions and encouragement!

[DJFL77I]

too much blaming anxiety