Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Undiagnosed...my Symptoms....please Input

mindyandy420

Recommended Posts

mindyandy420 Apprentice
mindyandy420
Posted

My name is Mindy...please read and help me.

I have had stomach aches since I was a child. I am now 31. My gut aches are sooo painful sometimes that I want to cry. Nothing helps me but going to the bathroom #2 and going right away.

Fast forward..after my second child (almost 2 years ago) I had suffered from loose stools and tingling in hand and feet off and on. I still get my BAD stomach aches. I want to say I get them 85-90% of the time I have to go #2. I understand this could be IBS. After my son I suffer from....

1. Severe stomach aches when I go #2 (since childhood worst now) at least twice a week.

2. Most stools are very loose (not watery but loose)

3. Brain fog. Trouble concentrating sometimes. Comes and goes.

4. Tired (not as active as I used to be)

5. Itchy all the time.

6. Peripheral neuropathy (comes and goes)

7. headaches

8. bloating bad after eating

9. Gas

10. red dots on me sometimes (anemia marks?)

11. muscle twithches (random) here and there sometimes

12. muscle aches

13. I have fainted twice before ?. Sometimes I feel like I'm going to.

14. Need to eat or feel weird....

I'm sure I have forgotten to mention somethings.

I have been to dr after dr and all say stress...blah blah

I have had numerous blood tests done and all fine. Once or twice I have borderline sodium (134-136) and once I had low potassium 134. My vit D is low. My ferritin was fine 43. Low but fine.

During my 2 pregnancies I always had low iron and had to take iron supplements with my prenatel vitimins.

I dont understand what is wrong. I'm tired of suffering the severe stomach aches and weird pains.

Please input on your suggestions.

Oh I did have my thyroid checked normal and my blood sugar is normal.

What is wrong?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


flourgirl Apprentice
flourgirl
Posted

Hi there! Yeah....I have had the "stress card" thrown at me, too. Several times. Mine is a long story that I won't go into here. This is about you. You have issues and are feeling bad. Obviously if you don't feel right....something is not right. You could ask for a blood test for Celiac...which may or may not come back positive even if you have Celiac. You might want to ask for an endoscopy specifically to look for Celiac damage, but also to look for anything else that may be going on. If your doctor insists on the "stress" thing...there are other doctors. You need one that will work with you. It doesn't hurt to find one knowledgable about immune disorders....and gastrointestinal issues....but not so easy to find. You could consult with a gastro.....get a referral from your own doctor.

No one here can confirm a diagnosis....but we can offer support, answer questions. There is a wealth of information here for your use and benefit.

Good luck to you. I hope you can get some answers soon. :)

Foxfire62 Newbie
Foxfire62
Posted

Sounds like you could potentially have celiac disease. Did a doctor adminster bloodwork that would look at your tTG IgA levels? If not, it would be recommended. Even if that comes back negative, it would behoove you to get scoped and a biopsy of your small intestines. Only this can rule out celiac disease. Should you have the biopsy done, please do not go on a gluten-free diet to ensure accurate dx.

Of course, if this is not the problem, it could be something else You might have multiple sclerosis. I only say this because of the peripheral neuropathy. If you have MS, you would need to have an MRI on your brain, possibly your spine, and if nothing shows there, the final way to diagnose MS is through a spinal tap (could be painful). If the MRI's show lesions, particularly on your brain, this could be an indicator of MS.

You could also be suffering from other intolerances. You might only be gluten intolerant. Or, you could have intolerances to lactose, soy, or any of the other common allergens. It might also behoove you to get allergy-tested for the foods that you eat. If nothing is conclusive here, try eliminating certain foods. Keep a food journal. Do you feel better some days than others? If so, why is this?

Your intestines might also have difficulty processing protein. Less likely, but also a possibility (one that I am considering for myself currently).

If you are deemed to have an autoimmune disease, you are prone to having others. It doesn't mean you'd have another autoimmune disease, but it's always something to consider.

Don't know if that helps, these are always some things to consider.

mindyandy420 Apprentice
mindyandy420
Posted
  • Author

You guys are great. Thank you for your input.

I have had an MRI and nothing.

I do think I had Iga..? done and dr didnt say anything. I'm not sure tho. I will have to ask to have it done again.

I have to find a new dr because I moved out of state and I also have to wait for my insurance to kick in.

Ther peripheral neuropathy only have sometimes. I its not bad just noticable. Thus far.

I'm thinking celiac but must be tested to know for sure. What does a biopsy consist of? Do they knock you out?

Does it hurt?

Things for me to consider...thank you

helgih88 Newbie
helgih88
Posted
My name is Mindy...please read and help me.

I have had stomach aches since I was a child. I am now 31. My gut aches are sooo painful sometimes that I want to cry. Nothing helps me but going to the bathroom #2 and going right away.

Fast forward..after my second child (almost 2 years ago) I had suffered from loose stools and tingling in hand and feet off and on. I still get my BAD stomach aches. I want to say I get them 85-90% of the time I have to go #2. I understand this could be IBS. After my son I suffer from....

1. Severe stomach aches when I go #2 (since childhood worst now) at least twice a week.

2. Most stools are very loose (not watery but loose)

3. Brain fog. Trouble concentrating sometimes. Comes and goes.

4. Tired (not as active as I used to be)

5. Itchy all the time.

6. Peripheral neuropathy (comes and goes)

7. headaches

8. bloating bad after eating

9. Gas

10. red dots on me sometimes (anemia marks?)

11. muscle twithches (random) here and there sometimes

12. muscle aches

13. I have fainted twice before ?. Sometimes I feel like I'm going to.

14. Need to eat or feel weird....

I'm sure I have forgotten to mention somethings.

I have been to dr after dr and all say stress...blah blah

I have had numerous blood tests done and all fine. Once or twice I have borderline sodium (134-136) and once I had low potassium 134. My vit D is low. My ferritin was fine 43. Low but fine.

During my 2 pregnancies I always had low iron and had to take iron supplements with my prenatel vitimins.

I dont understand what is wrong. I'm tired of suffering the severe stomach aches and weird pains.

Please input on your suggestions.

Oh I did have my thyroid checked normal and my blood sugar is normal.

What is wrong?

Hi,

Do you also get small raised bumps on your skin that appear where you itch and go away in a few minutes? I get those all the time and I think they are caused by release of histamine which is a chemical that your body makes when you are allergic to something. In this case your intestine could be inflamed and that's what causing the allergic reaction. To put things simply, the food that touches the inflamed intestine is causing the release of histamine and all sorts of symptoms. I'm not saying that you HAVE this problem, I'm simply saying I think you do. I have most of your symptoms as well but I have not been diagnosed yet (will know this week).

What I've been doing the last couple of days is fasting completely and drinking nothing but energy drinks (may sound really unhealthy but hear me out). Caffeine gives my intestine some shock that forces me to empty my bowels (I know you hate where this is going) but what happens is the there is no longer food touching my intestine (inflamed or not) and therefore my symptoms should go away. I have already noticed huge amount of energy increase and a 6 hour sleep gives me even more energy than 10 hour sleep does now. I know you might point out the placebo effect but this is more than that, the difference is that great (and I hope you'll feel this way too soon). The bad side about this diet is that I can't eat anything and this will eventually have to stop, but the purpose of this was to see how much energy I would gain and rule out some other cases like candida and diabetes. I've already gone to the doctor so only a few days more and I'll stop (keep in mind that the human body can live without solid food for weeks). Keep in mind that it can take a few days to clear your intestine, especially if you don't use something stimulating (like caffeine in my case). I took about two days for me. Since you're a grown woman I want you to make your own choices, what may work for me could be dangerous for others simply because they could have a different problem which is already taxing on their system.

I'm not saying you should do this diet unless you want to but I'm simply saying that the way you feel right now is definitely not stress related (SO many have tried to pin that on me and I'm NOT stressed - oh yes you are! - it's the exams) and this is NOT normal. You should not have to live like this so get it fixed now or you'll never fix it. I'm 21 years old, male, and I've always been weak and sloppy simply because as soon as I encounter a new problem I just justify it somehow (my list is already long so it's pretty easy) and just toughen it up. My mom did the same for a decade and now she had to get a part of her colon removed, so being a tough guy gets you nowhere. How tough is it to constantly feel ill and not enjoy life? One of my problems is being poorly motivated and with every week that passed I said to myself: ''It's fine, next week will be better'', or something like ,,I feel so tired and I have to work next weekend, I'll go to a doctor later''. I just kept on postponing this thing forever! When I finally managed to bring up the courage I chickened out the last minute with the feeling that If the doctor finds nothing then I'm just stupid. I couldn't make the connection between my symptoms because I had lived with them for so long (since I was a little boy) and I thought this was how life was supposed to be and there was nothing wrong with me (after all, I had been doing good in school! - WOW). But I left out the part that I had to study twice as long to get the same grades as my classmates. Justification leads you nowhere, I'm the perfect example of this. It wasn't until I got into college that I realized that the pressure was too much, I didn't have the time to spend twice the time studying and I felt sleepy all the time that made studying even harder. The fact that I failed to understand what I was reading made me feel even worse because If I couldn't understand this, then It wouldn't matter If I started studying something else... I would simply fail at that too.

Note that I changed my diet gradually so If you go cold turkey then the urge to eat something will become unbearable. I don't know the best way to find out your problem but I will make a post when I've found out which one of my doctors has found something. The problem with doctors is that they are SO confined to their own field that when I run into a dead end they've got nothing. Also, I'm the one that constantly has to call them to find out my results and for that I have to wait a week just for a phone call that takes less than 10 minutes. If the results are negative then they are not interested in me anymore (they weren't in the first place) and I'm the one the has to do all the research to find out which doctor I should go to next time. I also don't believe in something called IBS, I think this is the doctors trash bin where he throws dead end cases. Well it is more professional than saying: ''I don't have a clue''. Anyway, good luck with your search and don't get labeled with IBS (irritable bowel syndrome) or stress. Also, be aware of how your mind plays tricks on you (to some extent, you don't want the placebo effect that lasts one day and is gone the next), I think this is the reason doctors don't ask a lot of question about how you feel in general (rather do tests). I think most of the solutions online are false and made to profit (beware) since all the websites sell their ''special'' medicine.

Okay, this was my perspective so continue with your own research and see doctors (I'm not educated in the medical field, I'm internet educated ha ha).

mindyandy420 Apprentice
mindyandy420
Posted
  • Author

Thank you very much for your input. I'm glad to hear that you will possibly find results this week.

I have noticed when I drink coffee in the morning I must relieve myself shortly after...Ewh

I will continue my research and eventually find a dr (crossing fingers) that will help me.

I am leaning towards celiac but dont want to do the diet till I get testing done.

GI issues are more my problem. My stools are not solid but not watery....???? Very loose.

Regarding itchy bumps....YES. I've never know what it was. I always just put it off. I Itch all the time and get strange red bumps/rash. Sometimes I get the bumps with the clear fluid in it. Very itchy.

ravenwoodglass Mentor
ravenwoodglass
Posted
Regarding itchy bumps....YES. I've never know what it was. I always just put it off. I Itch all the time and get strange red bumps/rash. Sometimes I get the bumps with the clear fluid in it. Very itchy.

The description of those bumps sounds a lot like the could be DH a skin presentation of celiac. What you need to do is get to a dermatologist when the rash is active. Ask for a biopsy looking for DH specifically. They will need to biopsy the area next to the rash not the rash itself.

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


mindyandy420 Apprentice
mindyandy420
Posted
  • Author

Did I mention all this started after giving birth to my 2nd child via C-section.

Archived

This topic is now archived and is closed to further replies.

Go to topic listing
  • Celiac.com Sponsor (A19):


  • Member Statistics

    • Total Members
      131,663
    • Most Online (within 30 mins)
      7,748
    Funnybone
    Newest Member
    Funnybone
    Joined
  • Celiac.com Sponsor (A20):

  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m
  • Celiac.com Sponsor (A22):



  • Celiac.com Sponsor (A21):


  • Upcoming Events

  • Posts

    • Inkie
      Tea Bags and Gluten

      By Inkie · Posted

      Thank you for the information ill will definitely bring it into practice .
    • Scott Adams
      Tea Bags and Gluten

      By Scott Adams · Posted

      While plain, pure tea leaves (black, green, or white) are naturally gluten-free, the issue often lies not with the tea itself but with other ingredients or processing. Many flavored teas use barley malt or other gluten-containing grains as a flavoring agent, which would be clearly listed on the ingredient label. Cross-contamination is another possibility, either in the facility where the tea is processed or, surprisingly, from the tea bag material itself—some tea bags are sealed with a wheat-based glue. Furthermore, it's important to consider that your reaction could be to other substances in tea, such as high levels of tannins, which can be hard on the stomach, or to natural histamines or other compounds that can cause a non-celiac immune response. The best way to investigate is to carefully read labels for hidden ingredients, try switching to a certified gluten-free tea brand that uses whole leaf or pyramid-style bags, and see if the reaction persists.
    • Scott Adams
      Inconclusive results

      By Scott Adams · Posted

      This is a challenging and confusing situation. The combination of a positive EMA—which is a highly specific marker rarely yielding false positives—alongside strongly elevated TTG on two separate occasions, years apart, is profoundly suggestive of celiac disease, even in the absence of biopsy damage. This pattern strongly aligns with what is known as "potential celiac disease," where the immune system is clearly activated, but intestinal damage has not yet become visible under the microscope. Your concern about the long-term risk of continued gluten consumption is valid, especially given your family's experience with the consequences of delayed diagnosis. Since your daughter is now at an age where her buy-in is essential for a gluten-free lifestyle, obtaining a definitive answer is crucial for her long-term adherence and health. Given that she is asymptomatic yet serologically positive, a third biopsy now, after a proper 12-week challenge, offers the best chance to capture any microscopic damage that may have developed, providing the concrete evidence needed to justify the dietary change. This isn't about wanting her to have celiac; it's about wanting to prevent the insidious damage that can occur while waiting for symptoms to appear, and ultimately giving her the unambiguous "why" she needs to accept and commit to the necessary treatment. This article might be helpful. It breaks down each type of test, and what a positive results means in terms of the probability that you might have celiac disease. One test that always needs to be done is the IgA Levels/Deficiency Test (often called "Total IGA") because some people are naturally IGA deficient, and if this is the case, then certain blood tests for celiac disease might be false-negative, and other types of tests need to be done to make an accurate diagnosis. The article includes the "Mayo Clinic Protocol," which is the best overall protocol for results to be ~98% accurate.    
    • Scott Adams
      Medication

      By Scott Adams · Posted

      Welcome to the community! Generally, for a gluten challenge before celiac disease blood tests, Tylenol (acetaminophen) is considered safe and should not interfere with your antibody results. The medications you typically need to avoid are those like ibuprofen (Advil, Motrin) or naproxen (Aleve) that can cause intestinal irritation, which could potentially complicate the interpretation of an endoscopy if you were to have one. However, it is absolutely crucial that you confirm this with either your gastroenterologist or your surgeon before your procedure. They know the specifics of your case and can give you the definitive green light, ensuring your surgery is comfortable and your celiac testing remains accurate. Best of luck with your surgery tomorrow
    • Xravith
      Taking Probiotics but Still Getting Sick After Gluten – Advice?

      By Xravith · Posted

      Thank you for the advice. I’ve actually never checked for nutritional deficiencies, but for as long as I can remember, I’ve always taken vitamin and mineral supplements — otherwise my symptoms get worse. This week I stopped eating gluten to confirm whether my symptoms are really caused by it. Starting next week, I’ll reintroduce gluten — it’s sad to go back to how I was before — but at least I’ll be able to take the necessary tests properly. I think the diagnostic process will be long, but at least I’m happy that I finally decided to address this doubt I’ve had for years.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.