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

Feeling Discouraged...


alexisd

Recommended Posts

alexisd Newbie

Two months ago I was diagnosed as celiac. I believe I have only been Celiac for 1 1/2 years before diagnosis. I was just fine with zero problems and allergies until a large round of antibiotics. After the antibiotics - I ended up with alot of digestive issues, rashes, headaches, ect ect.

Anyhow...DH and I have two daughters. We were trying to conceive this year(before diagnosed) and ended up with 3 miscarriages. We never had any problems conceiving our daughters (but that was back when I was healthy.) I have been on a very strict gluten free diet for 2 months. I feel discouraged because we want so bad to have one more baby, and I worry it'll never happen. The miscarriages hurt me so bad and I worry I'll have difficulty carrying a baby to term.

Otherwise,I feel better, all of my symptoms have gone away and I actually feel great. But I find every now and then I get an occasional rash despite being as strict as I can with the diet. I home cook all our food and we never eat out.

I have been rash free for a full month, then I eat some Hersheys dark choc chips on yogurt and I get a rash. I can't contribute it to anything else but the chocolate chips - but they are supposed to be gluten free. I get discouraged because I'm trying to take care of my health and stay gluten free so we can TTC but then I feel like I've been set back. I know I've only been celiac for 1 1/2 years so I'm hoping the damage to my body hasn't been too great.

My other concern is I read alot of stories of women who have entered early menopause due to celiac. I'm scared that could be me. I have had the worst hot flashes (when eating gluten - before diagnosed), just horrible sweating spells. They have gone away since being gluten free and only come back when accidentally glutened. I am 34 years old my periods are exactly 28 days like clockwork and very normal.

We want so bad to extend our family by one more.

Can this happen for me? Has anyone else been through this? Are these normal feelings?

Sorry, if my post was all over the place - this has been bottled up in me.


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



Celiac.com Sponsor (A8-M):



mushroom Proficient

Welcome to the forum, Alexis. I am so sorry you are going through this sad, sad time with your miscarriages. It is very heartbreaking and stressful. But you are very young still -- many women today don't start their families until your age, so please don't think that your time is past.

With the miscarriages your body is sending you a message that it is not yet ready to carry a child to term. Gluten exacts a terrible toll on us and it does take time to recover. If you have not already done so, have your pcp run a blood panel for all your vitamins and minerals because celiac is a disease of malabsorption and you may be low on many of these, vitamins A, B, E, D, K, especially D and B12, but for babymaking folate as well, and iron/ferritin, potassium, zinc, magnesium. Once you have all these nutrients in good balance your body should be ready again to carry your next baby. Do not be in too much of a rush to conceive because you and the baby both need to be healthy :)

Two months is actually a very short time in the the period of gluten recovery. It took you one and a half years to get where you are, so it is going to take you a while to get back. Not the 1-1/2 years (actually a very short time in which to be diagnosed) but if it were me I would give it six months to restore your health. Many, many of our posters who had trouble conceiving before diagnosis have no problem once they have regained their health. :)

If your periods are regular and you are no longer consuming gluten, I think you are pretty safe from early menopause. Sweating, hot-flash-like symptoms can occur without menopause.

The rash is possibly beginning dermatitis herpetiformis which is the skin version of celiac, which can persist for some time after you stop eating gluten and is often aggravated in some people by iodine. So you could try avoiding foods high in iodine - such as milk and egg yolks, seaweed (sushi), etc. A google will show a list of these foods. So it is possible the yogurt contributed to your rash.

So keep up the good work of staying gluten free, supplement as necessary and in a few months you should be able to conceive and carry your baby to term. Do not be discouraged. You are doing well and have come a long way. :)

alexisd Newbie

Welcome to the forum, Alexis. I am so sorry you are going through this sad, sad time with your miscarriages. It is very heartbreaking and stressful. But you are very young still -- many women today don't start their families until your age, so please don't think that your time is past.

With the miscarriages your body is sending you a message that it is not yet ready to carry a child to term. Gluten exacts a terrible toll on us and it does take time to recover. If you have not already done so, have your pcp run a blood panel for all your vitamins and minerals because celiac is a disease of malabsorption and you may be low on many of these, vitamins A, B, E, D, K, especially D and B12, but for babymaking folate as well, and iron/ferritin, potassium, zinc, magnesium. Once you have all these nutrients in good balance your body should be ready again to carry your next baby. Do not be in too much of a rush to conceive because you and the baby both need to be healthy :)

Two months is actually a very short time in the the period of gluten recovery. It took you one and a half years to get where you are, so it is going to take you a while to get back. Not the 1-1/2 years (actually a very short time in which to be diagnosed) but if it were me I would give it six months to restore your health. Many, many of our posters who had trouble conceiving before diagnosis have no problem once they have regained their health. :)

If your periods are regular and you are no longer consuming gluten, I think you are pretty safe from early menopause. Sweating, hot-flash-like symptoms can occur without menopause.

The rash is possibly beginning dermatitis herpetiformis which is the skin version of celiac, which can persist for some time after you stop eating gluten and is often aggravated in some people by iodine. So you could try avoiding foods high in iodine - such as milk and egg yolks, seaweed (sushi), etc. A google will show a list of these foods. So it is possible the yogurt contributed to your rash.

So keep up the good work of staying gluten free, supplement as necessary and in a few months you should be able to conceive and carry your baby to term. Do not be discouraged. You are doing well and have come a long way. :)

Thanks, I really appreciate the information. I needed to hear something positive.

upwitht21 Rookie

I got pregnant 2 months after going gluten free (January of this year) miscarried in February and got pregnant again in July. I'm just about 26 weeks now. We did almost 4 years of fertility treatments with no results, diagnosed and within months I was pregnant with zero help. It takes time for your body to really heal.

Hang in there =)

mushroom Proficient

There should be a law that they have to test for celiac disease first before prescribing fertility treatments! :unsure:

alexisd Newbie

I got pregnant 2 months after going gluten free (January of this year) miscarried in February and got pregnant again in July. I'm just about 26 weeks now. We did almost 4 years of fertility treatments with no results, diagnosed and within months I was pregnant with zero help. It takes time for your body to really heal.

Hang in there =)

Congratulations on your healthy pregnancy! Thanks for reminding me that it takes time to heal - reading these posts has been helping me feel more positive about it.

jebby Enthusiast

It took me a good 18 to 20 months to get pregnant as my body healed from Celiac and I now have a healthy 9 month old. Also, like you, I get crazy "hormonal" type symptoms after getting glutened. I wish you the best!


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



Celiac.com Sponsor (A8-M):



Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,547
    • Most Online (within 30 mins)
      7,748

    gizmo1jazz2
    Newest Member
    gizmo1jazz2
    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

    • Scott Adams
      Your post demonstrates the profound frustration and isolation that so many in the Celiac community feel, and I want to thank you for channeling that experience into advocacy. The medical gaslighting you endured for decades is an unacceptable and, sadly, a common story, and the fact that you now have to "school" your own GI specialist speaks volumes about the critical lack of consistent and updated education. Your idea to make Celiac Disease a reportable condition to public health authorities is a compelling and strategic one. This single action would force the system to formally acknowledge the prevalence and seriousness of the disease, creating a concrete dataset that could drive better research funding, shape medical school curricula, and validate the patient experience in a way that individual stories alone often cannot. It is an uphill battle, but contacting representatives, as you have done with Adam Gray, is exactly how change begins. By framing it as a public health necessity—a matter of patient safety and protection from misdiagnosis and neglect—you are building a powerful case. Your voice and your perseverance, forged through thirty years of struggle, are exactly what this community needs to ensure that no one else has to fight so hard just to be believed and properly cared for.
    • Scott Adams
      I had no idea there is a "Louisville" in Colorado!😉 I thought it was a typo because I always think of the Kentucky city--but good luck!
    • Scott Adams
      Navigating medication safety with Celiac disease can be incredibly stressful, especially when dealing with asthma and severe allergies on top of it. While I don't have personal experience with the HealthA2Z brand of cetirizine, your caution is absolutely warranted. The inactive ingredients in pills, known as excipients, are often where gluten can be hidden, and since the FDA does not require gluten-free labeling for prescription or over-the-counter drugs, the manufacturer's word is essential. The fact that you cannot get a clear answer from Allegiant Health is a significant red flag; a company that is confident its product is gluten-free will typically have a customer service protocol to answer that exact question. In situations like this, the safest course of action is to consider this product "guilty until proven innocent" and avoid it. A better alternative would be to ask your pharmacist or doctor to help you identify a major national brand of cetirizine (like Zyrtec) whose manufacturer has a verified, publicly stated gluten-free policy for that specific medication. It's not worth the risk to your health when reliable, verifiable options are almost certainly available to you. You can search this site for USA prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      What you're describing is indeed familiar to many in the Celiac community, especially in the early stages of healing. When the intestinal villi are damaged from Celiac disease, they struggle to properly digest and absorb fats, a condition known as bile acid malabsorption. This can cause exactly the kind of cramping and spasms you're seeing, as undigested fats can irritate the sensitive gut lining. It is highly plausible that her reactions to dairy and eggs are linked to their higher fat content rather than the proteins, especially since she tolerates lean chicken breast. The great news is that for many, this does improve with time. As her gut continues to heal on a strict gluten-free diet, her ability to produce the necessary enzymes and bile to break down fats should gradually return, allowing her to slowly tolerate a wider variety of foods. It's a slow process of healing, but your careful approach of focusing on low-fat, nutrient-dense foods like seeds and avocado is providing her system the best possible environment to recover. Many people with celiac disease, especially those who are in the 0-2 year range of their recovery, have additional food intolerance issues which could be temporary. To figure this out you may need to keep a food diary and do an elimination diet over a few months. Some common food intolerance issues are dairy/casein, eggs, corn, oats, and soy. The good news is that after your gut heals (for most people who are 100% gluten-free this will take several months to two years) you may be able to slowly add some these items back into your diet after the damaged villi heal. This article may be helpful: Thank you for sharing your story—it's a valuable insight for other parents navigating similar challenges.
    • Beverage
      I had a very rough month after diagnosis. No exaggeration, lost so much inflammatory weight, I looked like a bag of bones, underneath i had been literally starving to death. I did start feeling noticeably better after a month of very strict control of my kitchen and home. What are you eating for breakfast and lunch? I ignored my doc and ate oats, yes they were gluten free, but some brands are at the higher end of gluten free. Lots of celics can eat Bob's Red Mill gluten-free oats, but not me. I can now eat them, but they have to be grown and processed according to the "purity protocol" methods. I mail order them, Montana Gluten-Free brand. A food and symptoms and activities log can be helpful in tracking down issues. You might be totally aware, but I have to mention about the risk of airborne gluten. As the doc that diagnosed me warned . . Remember eyes, ears, nose, and mouth all lead to your stomach and intestines.  Are you getting any cross contamination? Airborne gluten? Any pets eating gluten (they eat it, lick themselves, you pet them...)? Any house remodeling? We live in an older home, always fixing something. I've gotten glutened from the dust from cutting into plaster walls, possibly also plywood (glues). The suggestions by many here on vitamin supplements also really helped me. I had some lingering allergies and asthma, which are now 99% gone. I was taking Albuterol inhaler every hour just to breathe, but thiamine in form of benfotiamine kicked that down to 1-2 times a day within a few days of starting it. Also, since cutting out inflammatory seed oils (canola, sunflower, grapeseed, etc) and cooking with real olive oil, avocado oil, ghee, and coconut oil, I have noticed even greater improvement overall and haven't used the inhaler in months! It takes time to weed out everything in your life that contains gluten, and it takes awhile to heal and rebuild your health. At first it's mentally exhausting, overwhelming, even obsessive, but it gets better and second nature.
×
×
  • 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.